Sex, it is a common part of life (not to mention the primary cause). While the mention of sex can make some folks giggle and others quite uncomfortable, this is a topic that needs to be discussed. This is because, while no doubt most of us consider this aspect of life a private affair (some celebrities aside), there are many who are or will be impacted by ambiguous government policy on how the NDIS treats sex. So in the spirit of shaping a better, more person-centred NDIS for all of us, let’s talk about sex.
[Media description: video of the song ‘Let’s talk about sex’ performed by Salt-N-Pepa]
The National Disability Insurance Agency has made clear that the NDIS will fund supports that are assessed as reasonable and necessary.Officially, the NDIA’s view on what is a reasonable and necessary support under the NDIS is that the support;
- is related to the participant’s disability
- does not include day-to-day living costs that are not related to a participant’s disability support needs
- represents value for money
- is likely to be effective and beneficial to the participant, and
- takes into account informal supports given to participants by families, carers, networks, and the community.
But where does this leave participants when it comes to sexuality?
At the outset of the NDIS it promised ‘personalised’ and ‘innovative supports and services’. It aimed at increasing the independence and quality of life for individuals living with disability. Despite this, there is still a lot of ambiguity on the personal issue of sexuality, with a lot of the innovation left to individuals to figure out with their support providers or alone.
There is some evidence of the NDIA engaging with service users around the issue of sex education for those living with an intellectual disability including safe boundaries and addressing high risk sexualised behaviours. There is no doubt that this is positive, what is missing is any acknowledgement of the sexuality of those living with physical disability.
Sexuality is something that is part of life for many and can have a major impact on both our relationships and how we see ourselves. Yet for those living with disability sex seems to be a topic that remains ignored.
While the NDIS is a National initiative, State governments have an important role to play as regulators of sexual services. In 2016, the SBS program Insight explored the issue of sex, disability and the NDIS, highlighting the opportunity and challenges of the scheme and how State regulations limit what might be possible for participants.
Watch this video to learn how some people have been able to use NDIS to support fulfilling sex lives with their partner
Providers have a big role to play
In 2015 the World Health Organisation delivered a concerning report that showed “people with disabilities are twice as likely to find health-care providers skills and equipment inadequate to meet their needs, three times more likely to be denied care, and four times more likely to be treated badly” and further, that “Health-care providers may consider that people with intellectual disabilities or other disabilities should not have a sexual life, reproduce or look after children, and therefore should not need sexual and reproductive health services.”
This is alarming given that in the same year a survey was conducted by the Australian Bureau of Statistics (ABS) which reported that nearly one out of every five Australians was living with a disability. Taken together, we can see that large numbers of our population are not getting the information and support they need with regards to their sexuality. It is also worrying that some care professionals may be neglecting the sexual health of their patients due to stigma and misunderstanding.
Research has demonstrated that for individuals with acquired spinal injuries the impact this will have on their sexuality and sex lives is one of their major concerns. For many living with a physical disability, sexuality remains an unaddressed issue even though there are aids and equipment that can be utilised to address many issues. With the support of Physios and Occupational therapists, people can learn to safely use various aids if needed.
For many, disability has a direct impact on their freedom to participate sexually in life. With the use of specialised aids and equipment this can be addressed to allow the individual to fully live the sexual aspects of their lives.
Even when the need for access to these aids and equipment is directly related to a disability the NDIA does not appear to highlight sexuality as an important issue. It would seem that for many, having access to this type of support would certainly have value. However, in this instance it seems that value may be being prescribed by the NDIA rather than the service user, in such a way that contributes to the negative stereotype that limits full social inclusion for people with disability.
It is possible that the NDIS may consider the purchase of such equipment but without a clear policy, it’s up to us to share solutions and ideas in our community. This is not a perfect solution, sex and sexuality can be a sensitive topic and past research specific to spinal rehabilitation suggests that many individuals will not ask for information or support.
What Can Providers Do?
More than anything, the biggest thing providers of supports can do is be supportive. Be willing and open to have these conversations and provide constructive support. To help people find providers that are positive about sexuality and inclusion, we also have an option for providers to show they offer sexuality supports. This isn’t a standard NDIS category, but we welcome providers to update their CareNavigator profile and be a part of driving this change for a more inclusive NDIS. If you are a sexuality positive provider, let our community know and update your profile today!
What Can Participants and Carers Do?
It can sometimes feel like you’re facing this challenge alone. Know that this is not the case and that there is a community of people facing this same challenge, just like you. If you have experience of how to work within the system to support sexual inclusivity, share your advice – there are many navigators who want to learn from you. If you know a provider that has been amazing in supporting you with this challenge, let us know about them and share your advice with us here. The more we share advice and grow the community, the less taboo this challenge becomes and the better the outcomes for everyone ?