Lack of Data Means Lack of Action – A clinical examination of access to health services for women with disabilities
Written by By Keran Howe and Sue Salthouse. Presented by Keran Howe on behalf of Women With Disabilities Australia (WWDA) to the Human Rights and Equal Opportunity Commission (HREOC) National Summit: ‘Access to Health Services for People with Disabilities’. Sydney, 28 May 2004. Copyright WWDA 2004.
Women With Disabilities Australia acknowledges the people of the Eora peoples, the traditional owners of the land on which we hold this forum. On behalf of Women With Disabilities Australia I would like to thank HREOC for convening this forum and I hope that it will enable the commencement of some significant strategies to address the current lack of access to health services experienced by people with disabilities. I would like to acknowledge the work of Sue Salthouse in the preparation of this presentation today.
Women With Disabilities Australia is a national advocacy organization representing women across a spectrum of disabilities. Women with disabilities constitute almost 20% of the female population. Our organization arose out of recognition of the particular disadvantage that women with disabilities experience as compared with men with disabilities and compared with other women.
In Australia, in 1996, 51% of women with a disability earnt less than $200 per week compared to 36% of men with a disability. Women with disabilities are denied equal access to education – our literacy rate as a group, worldwide, is probably under 5%.
Women with disabilities do not have equal access to the labour market – the UN reports that less than a quarter are in paid employment, though the majority contribute significantly to their families and communities through cooking, cleaning, caring for children and relatives, and carrying out daily chores.
Women with disabilities receive only about one-fifth of the rehabilitation in the world. These figures indicate the significant marginalisation that women with disabilities face within our community.
In my talk today I will focus on the status of women with disabilities and how this affects our health and in this context to examine access to preventative screening services for women with disabilities as an example of the issues that impact on access to health and health services in general.
The impact of Structural Inequality on Health
We have heard from Karen and Rowena about the barriers to access for people who are blind or deaf and no doubt Sue will speak in detail about barriers for people with mobility problems but I think it’s important for me to draw your attention to barriers that may be a particular concern for women with disabilities.
The influence of socio-economic status as a major determinant of health has been well documented (Howe and Frohmader, 2001). However, I don’t think in health policy we yet accord sufficient credence to the impact on people’s health of structural inequality. For example we know that if we want to prevent lung cancer we need to prevent smoking as a behaviour. But we also know that smoking correlates with poverty and disempowerment. We have to seriously understand the broader social context as a factor in contributing to risk behaviour and in contributing to health breakdown. So any consideration of access to health and access to health services must take a cross portfolio view of health. We must have a whole of government approach which stops fragmenting our responses. For example we know transport impacts on health status so we need to work with both health and transport portfolios to address health. The diagram here shows our traditional response to health and disability and the next one demonstrates the importance of a more holistic response. (Powerpoint graphic).
For women with disabilities structural inequality is enhanced by gender inequality. As we have seen women with disabilities are more likely to be institutionalised, poor and less educated. Rates of physical and sexual abuse are approximately twice those typically found for nondisabled women (National Research Council, 1996).
The extent to which women with disabilities internalize their low social status will reflect the extent to which these factors impact on women’s health through depression, anxiety and poor self esteem.
US studies show that in measures of self esteem women with disabilities rank lowest of all groups (Heuman, 1997 in Fairchild, 2002:18). In lieu of direct data for Australia, we extrapolate to the Australian situation. The lower one’s esteem the lesser the likelihood of seeking access to any health services and the greater the likelihood that depression or other mental health issues will cloud all activities. Research by our organisation does show that half of women with disabilities list mental health as a concern (Women With Disabilities Australia, 1999, Women With Disabilities Australia, 2000, Salthouse, 2001).
Evidence is that women with disabilities certainly delay seeking medical attention until they are in a crisis situation. (Fairchild, 2000:20).
Many women with disabilities may not identify themselves in the projected images of non-disabled women in campaigns to promote health. This results in reduced health awareness and alienation from mainstream health services (Cooper and Temby, 1995). If we want to reach diverse groups we must project diverse images in our health messages.
Lets look at the impact this may have on accessing services: for some women, accessing health care, for example a pap smear, may bring up associations of past sexual abuse, or past negative interactions with doctors. The procedure itself may be associated with high levels of pain, or may precipitate adverse physical or psychological reaction. Even the anticipation of such reaction may be associated with a high level of apprehension.
In addition to this, it could be that a woman with disabilities does not have the additional time, energy or mindset to deal with medical issues other than those arising from her disability.
The impact of structural inequality on attitudes of health professionals
The attitude of doctors, health professional and carers towards women with disabilities and their sexual health also reflect broader social attitudes, are complex and often reflect a medical model that pathologises disability rather than viewing the health of women with disabilities and non-disabled women alike.
‘Diagnostic overshadowing’ describes the phenomenon where symptoms or conditions are wrongly attributed to the person’s primary disability, rather than to a separate medical condition.
Even when separate diagnosis is made, the prescribed treatment often takes no account of possible interference or interaction with existing treatments for our disabilities.
Unfortunately too, women with disabilities may be labelled by health professionals as ‘chronic presenters’. Investigation of new complaints is not taken seriously or there can be active avoidance, bordering on paternalism of heeding the complaint (Butler 1975:79 in Cooper and Temby, 1995).
For example: ‘Elaine’ is a person with polio who has been a parent competently running a household. She reported to her GP complaining of ‘intense fatigue’. This was dismissed as a symptom of ‘ageing and disability’. Persistence on the part of the patient eventually resulted in a blood test. Anaemia as a result of a kidney infection was diagnosed. But when the original symptoms failed to respond to treatment for this condition Elaine was dismissed as a ‘chronic presenter’. Elaine persisted and eventually obtained a referral to another hospital where bowel cancer was found. It had advanced to the stage of bleeding – which ironically now made the diagnosis much easier. This cancer had been the cause of the original symptoms.
In this case the woman concerned was a competent and assertive person with knowledge of the health system through representation on a health advocacy committee. Had Elaine not had a high level of self confidence she would not have received the appropriate treatment and may have not re-presented until the symptoms were well advanced.
Much has been written on the power imbalance between the medical professional and the patient. (Cooper and Temby, 1994). This imbalance exists even where the patient is able-bodied but is exacerbated by disability and even more skewed when the patient is a woman with a disability. Awareness of this imbalance may impede a woman’s ability to communicate easily with her doctor or to feel she is taken seriously.
The medicalisation of disability can have other impacts on a woman’s health
Women with disabilities are over represented in supported accommodation, nursing homes and psychiatric facilities where the ‘health’ focus is on the disability and there is little holistic conception of health or consideration of preventative health measures. We need to target these women specifically.
A health professional or carer, whose view of a woman is overshadowed by her disability, may consider a woman to be asexual, or not likely to be sexually active and perhaps even that she is not wanting to be sexually active. (Gardner in Kallianes and Rubenfeld, 1997). This attitude may prevent a health professional seeing the need of cervical screening as well as leaving a woman more vulnerable to abuse and to an STD.
A health practitioner may acknowledge the need for screening, but may not have any knowledge of how to effectively engage with a client with a disability. Thirdly he/she may be unsure of how to adapt the procedure itself to meet the clients’ different situation or needs.
All of these attitudinal barriers are reported by women with disabilities as being significant in their interaction with the health system.
Lack of Data
If we look particularly at the issues for women with disabilities in relation to cervical and breast screening, I would like us to consider: how do we know what we are actually talking about when we talk about lack of access to health services? How do we know the size of the problem. The answer is “we don’t” In an era when we attach critical importance to an evidence base for our health practice, we lack the vital research and data needed to know clearly what the issues are and who we need to target to improve the health status of women with disabilities.
In the context of the marginalization of women with disabilities, this invisibility shouldn’t really surprise us. But where there is no research and no data collection regarding the lack of participation in health services, where there is a lack of statistics on the causes of illness and causes of death, we have only anecdotal information that there is a problem. If indeed there is a problem we cannot know its size, nor can we know the consequences of its not being addressed. Lack of data means lack of action.
Some of the information I am using today is an extrapolation to the Australian situation from overseas data. Much is based on scant Australian studies, and unfortunately too much is based on anecdotal information.
Breast Cancer Screening
Little data is collected in Australia on the uptake of breast and/or cervical screening for women with disabilities, although somehow State and Territory Departments of Health impute that women with disabilities are one the most under screened groups of women in Australia (Temby 1997, Frohmader 1998, NSW Cervical Screening Programme, 2004). For instance BreastScreen Australia report drastic under-representation of women with disabilities, but to our present knowledge, there is no routine gathering of information as to whether the women presenting for screening identify as having a disability. Nor is there research, or data, or information about the number of women with disabilities with breast or cervical cancer.
Some limited analysis can be gleaned from the Australian Longitudinal Study on Women’s Health. This study showed that, despite the fact that the risk of developing and dying from breast cancer increases with age and that the risk is highest for women aged over 70 years, 41% of women aged 70-75 with core activity restriction had never had a mammogram. Almost 30% of women in this cohort had never had a pap smear, 39% have not had regular pap smears (Rutnam et al, 1999 in Frohmader 2002).
In 1999, the Commonwealth Office of Disability (Department of Family & Community Services) commenced analysis of the 70-75 cohort of the ALSWH survey to determine whether it could provide reliable data on which to base future policies, plans or programs for older women with disabilities. However, this analysis was abandoned by the Commonwealth Office of Disability in 2000, as it was not considered ‘a priority’.
It is possible that women with disabilities face an increased risk of breast cancer for a variety of reasons, including: more frequent x-rays; differences in exercise and nutrition; prolonged use of certain medications, and late childbearing or nulliparity. Despite this, women with disabilities in Australia are not identified as an under-served population for the purposes of breast cancer screening, nor are they targeted by breast cancer organisations for education and outreach.
The Commonwealth funded National Breast Cancer Centre (NBCC) identifies ‘the need to reduce inequity in access to information and services for breast cancer’ but limits it’s mission in this area to Aboriginal and Torres Strait Islander women, women from non-English speaking backgrounds, and women in rural and remote areas of Australia (NBCC 2000 in Frohmader 2002). Women with disabilities remain invisible.
Cervical Cancer Screening
A similar picture emerges when we look at cervical screening. Some research suggests women with disabilities are as likely to develop cervical cancer as women without disabilities (Temby 1996) and yet the National Cervical Screening Program also imputes that women with disabilities are underscreened. The Commonwealth funded National Cervical Cancer Screening Program identifies as one of it’s key elements: ‘special initiatives to promote high participation levels among under-screened groups including older women, women from culturally and linguistically diverse backgrounds, women from Aboriginal and Torres Strait Islander backgrounds, women of low socio-economic status and women who live in rural and remote areas’ (AIHW 2000). Once again, women with disabilities are omitted. Australia’s report on cervical screening ‘Cervical Screening in Australia 1997-98’ (AIHW 2000) does not provide any reference to, or data on women with disabilities. Data is provided on women in rural and remote areas, and Indigenous women.
The ‘Guidelines for General Practitioners’ published this year by the NSW Cervical Screening Programme also indicate the limited research available. These Guidelines are excellent but are not able to attribute high level empirical evidence to most sections of the publication.
Women With Disabilities Australia acknowledges that data on uptake of cervical screening by women with disabilities is difficult to collect as a large proportion of the process is conducted by GP’s. However if data can be collected for other target groups why not women with disabilities?
There have been some initiatives in the area of screening over the last three years. These have been strongly influenced and partly driven by work done by Women with Disabilities Australia. State and Territory Governments, in association with the Commonwealth Government have begun to address some of the systemic barriers and informational barriers for women with disabilities presenting for cervical screening. Papscreen Victoria has undertaken specific research and is now implementing a programme of strategies. However most of the targetted programmes are based on anecdotal rather than statistical evidence. Without prioritizing appropriate research, efforts to improve access may well be misdirected and without evaluation we do not know the consequences of this lack of focus on women with disabilities in these programmes.
Other systemic barriers for women with disabilities
Finally I would like to consider now other barriers that prevent access to cervical and breast screening for women with disabilities.
As I mentioned earlier, Papscreen Victoria has in place a raft of excellent strategies which target women with disabilities. Their website has a search facility to find papsmear locations by postcode or town. The search may be refined by a number of disability parameters, amongst which is the ability to select for an adjustable height examination table. What a powerful tool !. In practice, selection of any one of the disability features usually yields a NIL result in a search. No matter how well you reach out to the target group of women with disabilities, you make a negative impact if the facilities to cater for their needs are not available.
Lack of access to information
We will hear from other speakers about issues of access to information. I just want to report that anecdotal evidence shows that women with disabilities report being unable to find appropriate information in a number of health areas (Cooper and Temby, 1995 #2).
Lack of education and low income make many women with disabilities less likely to know about preventative health procedures. An example of this is that most states screening programmes send out a reminder letter once an individual’s pap screen is overdue. However you have to attend for an initial pap screen before you are in this system. Even if you do enter the system, because no data about disability is collected there is no way for an agency to know whether the recipient needs a plain English reminder or one in an alternative format such as large print.
For many women with disabilities the cost of a visit to the doctor can be prohibitive. Even when bulk-billing is available, it does not mean that the visit costs nothing. In many cases we must add to this the cost of transport and the cost of a carer, so that a free visit to the doctor can cost up to $100. We also know that women with disabilities are less likely to have health insurance but these associated costs are not recoverable anyway.
Health Care processes
For GP’s, as for many other health professionals, systemic barriers impact on health care for women with disabilities. Appointment times are short, and medical professionals operate under time duress. So there is time pressure put on both the professional and the client. This may be an issue in consulting with a woman with a disability. There may also be difficulty in accessing accurate health history of the client. Records may be incomplete or held in different places according to the different aspects of treatment taking place by different health centres.
In February this year Women With Disabilities Australia wrote a letter to HREOC outlining all these concerns. We appreciate the Commission’s acknowledgement of their reality. Today’s forum is held as a response to these and other health access issues raised by other disability organisations.
Women With Disabilities Australia has also received a response from the Parliamentary Secretary to the Minister for Health and Ageing which in part points out that an objective of the National Cervical and BreastScreen Australia programmes is that the services should be accessible to all.
However, the joint programmes’ objectives will not be achieved unless the structural nature of barriers for women with disabilities is understood, unless data is collected and specific research is undertaken, and unless barriers to access are removed and the health system is effectively resourced to reach out to women with disabilities. Without this approach future funding will be misdirected and wasted.
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