Why Gender Should be Considered in Implementing the NDIS
Veronica Wensing, Head, ACT Office for Women, Gender Adviser to the ACT National Disability Insurance SchemeTaskforce
Gender is always an issue, even if it is rarely acknowledged in service systems. A Gender Advisor was appointed to the ACT National Disability Insurance Scheme (NDIS) Taskforce initially to look at the design of one of the ‘NDIS Readiness’ projects in the ACT – a large $9.3m grant round in the year before the NDIS was launched in the ACT. We called it the Enhanced Service Offer.
The goal of the grant round was to give people with a disability, their families and carers, the experience of choosing services and equipment which they thought would make a difference in their lives, as well as providersthe experience of responding to consumer demands.
When the first round of grants was awarded fewer than 50 per cent of grants went to women, and the NDIS Taskforce wanted to know why. Concerns were raised with us by Women with Disabilities ACT and Women’s Centre for Health Matters. This combination of factors led us to appoint a Gender Advisor to examinecurrent access to disability support services,
Initial examination of the application guide for the Enhanced Service Offer showed there was no inadvertent gender bias in the criteria for obtaining a grant or the application and assessment process. The lower success rates for women pointed to common attitudinal and environmental barriers likely being the underlying cause for perceived or apparent inequities.
There was an improvement in the gender balance of successful applicants in the second round. - Round 1: 44 per cent female, 56 per cent male; Round 2: in 49 per cent female/51 per cent male.
Methodology for a General Review
The Gender Advisor, ACT NDIS Taskforce looked at the existing evidence that women and transgender/intersex persons with disabilities experience significant marginalisation and discrimination based not only on their gender, but compounded by their disability.
The Gender Adviser undertook a literature review and had regular discussions with key stakeholders such as Women with Disabilities ACT, Victorian Women with Disabilities and Women with Disabilities Australia, Advocacy for Inclusion, Carers Australia, individual members of the Expert Advisory Panel and local services providers such as InannaInc, staff at the Disability Information and Support Hub, Northside Community Services and Disability ACT and the ACT NDIS Taskforce. . She also drew upon data collected by the Australian Bureau of Statistics – Summary of Disability, Aging and Carers collections of 2009 and 2012. More detailed data was available from the 2009 collection where unpublished data was used in the Report to the Council of Australian Governments on Disability 2010-11. In-house data arising from the Enhanced Service Offer processes in the ACT was used to analyse local characteristics and where appropriate, used for comparison with Trial sites.
A gender specific workshop to discuss findings and recommendations was held with the Taskforce and selected key stakeholders from Housing ACT, Disability ACT, two members of the Expert Panel and a representative from the NDIA.
The Gender Adviser found that Women with Disability are the single largest cohort of women to experience interpersonal violence, have lower employment and labour force participation rates than women without disability or men with disability and are more exposed to serious violation of the human rights through medical interventions such as non-consensual, forced sterilisation. Women with disabilities also access disability support services at a lower rate than men with disability despite their prevalence in the community being higher.
Globally, women with disabilities continue to face higher levels of abuse and violence, and more extensive discrimination than non disabled women. Their contribution to their families, communities and countries is often underestimated, under-recognised and under-paid. Women with disabilities frequently struggle to access educational and economic opportunities, resulting in economic forms of dependence which deny their agency. The situation for women in Australia and the ACT is no different.
Evidence shows that men with disabilities have higher labour market participation rates, are almost twice as likely to have a job, enjoy higher levels of salary, are disproportionate recipients of government programs, vocational rehabilitation, training, formal care, and similar benefits, and may also have a higher educational attainment at senior secondary or tertiary levels. In addition, women with disabilities, compared to their male counterparts, are less likely to own a house, are more often institutionalised, and report higher levels of unmet needs. Compared to nondisabled women, they are less likely to receive adequate health services and to fully enjoy access to telecommunications, and are more likely to face situations in which the dignity or autonomy is violated. (1)
Additionally, transgender and intersex persons experience extreme marginalisation, high rates of psychosocial issues and low engagement rates with mainstream services and low employment rates.
There is a need for gender awareness from the first point of contact and engagement with the NDIA. This has implications for service providers and their workforce, including the application of internal quality standards that highlight the need for and benefits of gender awareness.
Ideally if all workers at all levels have an increased awareness of specific gender based issues affecting women and transgender/intersex persons with disabilities, then appropriate necessary and reasonable supports chosen and supported in a context of genuine choice and control.
The ACT Gender Adviser recommends that the NDIA develop a set of questions for planners to use with participants, which can illicit feelings of safety and increase freedom from harm. It will also be important to train planners to respond to disclosures of violence and other harmful practices in an appropriate and respectful way, and refer participants to appropriate mainstream supports for additional assistance.
Furthermore, worker an awareness of gender and gender specific issues provides the potential during the planning process for women participants to develop an understanding of how they can identify reasonable and necessary supports for them in relation to their role as carers and/or parents.
Demographics
In the Australian Bureau of Statistics Summary of Disability, Aging and Carers (SDAC), disability is defined as ‘any limitation, restriction or impairment which restricts everyday activities and has lasted or is likely to last for at least six months. In 2009, it was estimated that 18.5 per cent of all Australians had a disability that restricted their daily living in some way.
At the 2011 Census, the total population of the ACT was 357,222. Of the total population of the ACT in 2011, females formed a slight majority at 50.5 per cent.
In the ACT 13 per cent of females – 21,500 women have a disability. They make up 54 per cent of the total population with disabilities. (2) This number is not only a substantial proportion of the population with disabilities in the ACT, but is also a significant proportion of the ACT female population. Men with disabilities, by contrast, number 18,200 and make up 12 per cent of the total male population.
Figure 1: ABS 2012 Disability, Aging and Carers (SDAC) survey data: Summary of findings – by gender, number of population in the ACT.
This figure shows that there are more females than males in the ACT with a reported disability. Whilst the figures are the almost the same for profound core activity limitation, in all other categories, there are more women than men.
Figure 2: ABS 2012 Disability, Aging and Carers (SDAC) survey data: Summary of findings, Table 3. Age and gender distribution, by number.
For 5 – 14 year olds, rates of disability and rates of profound or severe core activity limitation for males were 11 per cent and seven per cent respectively, close to double those for females in the same age group (six per cent and three per cent respectively). (3) This marked disparity in the five-14 age range persisted with little change in the 2012 SDAC survey. This is consistent with data from the ACT Education Directorate which shows that there were 494 girls and 1490 boys in the system in 2013. This five to 14 age range anomaly points to a need for targeted research to find out what part gender may play in the diagnosis of some types of disability, for example autism, and what factors lead to the disparity disappearing by age 15 to 24.
However, in both 2009 and 2012, there is little difference in the rates of disability and the rates are profound or severe core activity limitation for males and females aged 15 to 24. Moreover in older age groups, both rates are greater for women.
Nationally, three-fifths (59 per cent) of disability support service users were male. The higher rate of men engaging with disability support services is consistent with data related to the ACT. This occurs despite females outnumbering males overall, including where impairment is profound and/or severe.
Women experienced higher rates of 12-month mental disorders than men (22 per cent compared with 18 per cent). Women experienced higher rates than men of Anxiety (18 per cent and 11 per cent respectively) and Affective disorders (7.1 per cent and 5.3 per cent respectively). However, men had twice the rate of Substance Use disorders (7.0 per cent compared with 3.3 per cent for women).
Figure 3: National Survey of health and Wellbeing: Summary of results, 2007. 12 Month mental disorders by major disorder group, by gender and proportion.
Whilst there has been no analysis of what contributes to women developing more anxiety and affective disorders as opposed to men, the survey does show that mental health may be impacted by individual or societal factors including economic disadvantage, poor housing, lack of social support and the level of access to and use of health services. A person’s socio-economic circumstances (for example, employment) may impact on their likelihood of developing a mental disorder. Studies have shown that people of lower socio-economic status have a higher prevalence of mental disorders, particularly depression and certain anxiety disorders. Mental illness may also impact on a person’s employment, housing, social support. People living in one parent family with children (90 per cent are headed by women) had a higher prevalence of anxiety disorders than other types of household, while people living in group households will likely to have a substance use disorder. People who have never been married experience almost twice the prevalence of 12 month mental disorders compared with people who were married or living in de facto relationships.
Given what we already know about women with disabilities having lower incomes, being less engaged in the workforce and generally being more disadvantaged than men, the higher rates of anxiety and affective disorders in women is not surprising. Additionally, given the prevalence of violence against women, it could be a possibility that experiences of violence are a contributing factor to this phenomenon. It is not unusual for victims of interpersonal violence to experience post Traumatic Stress Disorder.
More than 90 percent of people with developmental disabilities (aka intellectual disability) will experience sexual abuse at some point in their lives. 49 percent will experience 10 or more abusive incidents. (4)
Statistics indicate that 90 per cent of women with intellectual disabilities have been sexually abused. 68 per cent of women with an intellectual disability will be subjected to sexual abuse before they reach 18. (5)
A wide-ranging study based on the Mental Health and Wellbeing Survey 2007, published in the Journal of the American Medical Association in 2011 has found the more types of gender-based violence a woman suffered, the more likely she was to develop lifelong mental disorders, disabilities and substance abuse problems.
The study of more than 4000 Australian women looked at their experience of the four most common types of gender-based violence - sexual assault, rape, stalking and being badly beaten by their partners.
It found strong links between those four types of violence and mental health problems including attempted suicide, post traumatic stress disorder, panic attacks, depression, anxiety, and substance abuse.
Women who suffered more than three forms of violence had a 90 per cent chance of developing a lifetime mental disorder compared to a 28 per cent chance among those who had not. Even if the women experienced fewer types of violence, the rate of mental disorders remained high - 69 per cent for those exposed to two types of violence.
- Women with disabilities are more marginalised than men with disabilities and non-disabled women.
- Women with disabilities experience much higher levels of interpersonal violence than non-disabled women and disabled men.
- There are more women than men with disabilities, yet more men than women access support services.
- Women do the majority of informal caring of persons with disabilities – mostly mothers.
- Many women with disabilities are also carers and/or mothers themselves.
- More male carers than female carers seek additional supports and services for the person they are caring for.
- Aboriginal and Torres Strait Islander women experience higher rates of disabilities than non Aboriginal and Torres Strait Islander women.
Women with disabilities identify key barriers to receiving adequate and appropriate supports as;
- experiences of violence;
- removal of children due to parental disability;
- disparities in service provision;
- low employment opportunities; and
- access to education.
The following recommendations were discussed in a gender workshop to validate the recommendations and prioritise actions.
- Have appropriately posed gender based questions, to be used at first interface with support planners which can assist to identify violence and subsequently determine the suitability and adequacy of the reasonable and necessary supports requested.
- Ensure that the training materials being prepared for support planners and all disability support workers includes a module about gender, gender equity and intersectionality with violence and ensure that women with disabilities and transgender/intersex people are involved with the development and provision of such education.
- Develop tailored and targeted communication strategies for women, Aboriginal and Torres Strait Islander women and transgender/intersex persons about the NDIS and their prospective eligibility to participate in the scheme.
- Develop evaluation/outcome measures which can indicate increased access by women and transgender/intersex persons in addition to measuring satisfaction with provision of services and supports.
If gender differences are not considered in relation to the NDIS, and of course other human services programs then there is a risk that women and transgender/intersex persons will continue to access less supports and/or not have appropriate supports which allow for maximisation of their opportunities to make decisions about their life goals while also enabling them to live free from abuse, neglect and exploitation. Increased independence and stability cannot be achieved unless issues of safety and equity are addressed in the first instance.
Endnotes
1. Salthouse S 2008, The Status of Women with Disabilities in Australia – A Snapshot, Québec conference proceedings.
2. Australian Bureau of Statistics 2013, Disability, Ageing and Carers, Australia: Summary of findings 2012,Cat no: 4430.0, Table 5 Commonwealth of Australia, Canberra.
3. Ibid.
4. Valenti-Hein Dand Schwartz L 1995, The sexual abuse interview for those with developmental disabilities, James Stanfield Company, Santa Barbara, California.
5. Frohmader C 2002, ‘There is no justice – THERE’S JUST US: The Status of Women with disabilities in Australia. Canberra: Women With Disabilities Australia (WWDA), cited in Salthouse S and Frohmader C 2004, Double the odds: domestic violence and women with disabilities.