NDIA Accountability Project

NDIS support for sexual health of people with profound physical disabilities

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Committee Secretary

Department of the Senate PO Box 6100 Parliament House CANBERRA ACT 2600

E-submission: ndis.sen@aph.gov.au

Dear Sir or Madam

Thank you for considering my submission regarding the implementation and performance of the National Disability Insurance Scheme (NDIS).

My submission is narrowly focused on the National Disability Insurance Agency’s (NDIA) policy regarding participants with profound physical disabilities who require assistance to enjoy sex and to express their sexuality. In passing, however, I wish to voice my strongest support for this paradigm shift from a charity model of care to a human rights and compensation-like model. The long-term future of the NDIS is to become a world leading model and it is already an excellent economic stimulus.

Sex is important to my wife, Jenni, and I. We married on 1 December 1990 and, while cerebral palsy profoundly disables us both, we were independent in our enjoyment of sex until Jenni broke her foot in September 2008. This break was misdiagnosed for five months and her delayed recovery hastened the decline in our ability to enjoy sex without assistance. Too young to give up on sex, in early 2010 we nervously, and reluctantly, took the relationship-saving decision to ask for help. This help had to be provided by a sex worker because ethical and legal limitations on whom we could ask.

Since August 2010, we have received government funding for ‘conjugal support’. First, under the ACT Government’s disability program. And then, since 2015, under our first two NDIS Plans. My current NDIS fully self-managed plan is my first direct funding agreement to not explicitly include this type of support. Instead, it allows for the engagement of services to provide ‘one on one support for community access’ to enable me to achieve my goals. These include: maintaining my relationship with my wife; and maintaining good physical and mental health. While I appreciate the high level of flexibility, I note that this lack of specificity reduces the political risk that NDIA be criticised for funding, what some may consider, morally dubious and, in some jurisdictions, illegal activities.

The NDIA’s dilemma I suspect that, at least at the senior executive level, the NDIA accepts that people with profound physical disabilities have human rights in relation to their sexuality and a right to reasonable and necessary assistance to enjoy sex.

Sexual Health Support under Disability Legislation

The World Health Organization (WHO) defines sexual health as: ‘…a state of physical, emotional, mental and social well-being in relation to sexuality; it is not merely the absence of disease, dysfunction or infirmity. Sexual health requires a positive and respectful approach to sexuality and sexual relationships, as well as the possibility of having pleasurable and safe sexual experiences, free of coercion, discrimination and violence.’ Accessed 3 Dec 2017 at: http://www.who.int/reproductivehealth/topics/sexual_health/sh_definitions/en/

Article 25(b), of the Convention on the Rights of Person with Disability (CRPD) requires governments to: ‘Provide those health services needed by persons with disabilities specifically because of their disabilities’; and

The satisfaction of the ‘reasonable and necessary’ test in section 34 of the National Disability Insurance Scheme Act 2013 (Cth).

I suggest that, read together, these three instruments: legitimise sexual health as a genuine concern; identifies an obligation on governments to provide for support; and identifies a legislative means for providing the support where it is necessary and reasonable to do so.

I note in passing, that under the law sex isn’t trivial. For instance, the loss of the enjoyment of life (i.e., the enjoyment of sex) can be a ground for damages in torts.

So, where’s the problem? Essentially, the problem is: a) the community’s, actual or perceived, attitudes towards sex and, especially, sex associated with people with significant disabilities; b) The possibility that the public will view such a funding item as tax-payers’ money being used to buy sex for the disabled rather than being used to alleviate poverty or reduce taxes; and c) the funding will be seen as the state sponsoring a morally dubious and very expensive activity that exploits vulnerable (mostly) women and that is illegal in most other countries.

Why isn’t a vaguely drafted NDIS Plan the best solution? I appreciate the NDIA’s dilemma. I have concerns, however, that the implicitness of this approach:

  • Limits those who gains access to these services because it requires the participant to self-manage a part of his/her Plan to be able to engage non-registered providers (as few sex workers are prepared to forgo their privacy to register with the NDIA) and understand to subtleties of language in non-explicit plans. It also planners, who are uncomfortable with the topic of sex work, to avoid the subject when conducting planning sessions.
  • Denies the opportunity for sex work to be legitimatised and appropriately regulated.
  • Leaves open the policy decision to prohibit NDIS funds from being used to meet these disability-related needs.

It is my suggestion that, given the degree of stigma associated with sex and sex work, national legislative provisions should be considered.

Yours sincerely

David Heckendorf 3 December 2017

Attachment A:

Jenni’s and my need for such services have been on the public record in the following forums:

    Submission 634 to the Senate Inquiry into: National Disability Insurance Scheme Bill 2012.
    Online:
    https://www.aph.gov.au/Parliamentary_Business/Committees/Senate/Community_Affairs/Co
    mpleted_inquiries/2010-13/ndis/submissions

    'Sex and Disability', SBS Insight, Episode 10, 2016.
    Online: https://www.youtube.com/watch?v=eMAJHmoj9zs

    'People with Disability Accessing Sex Workers', a speech given 5 April 2012 at the ACT
     Legislative Assembly. Online: http://www.touchingbase.org/resources/library/people-with-
     disability-accessing-sex-workers

    'Not without needs' by a third-year journalist student, Lauren Fitzpatrick, 21 July 2013.
    Online: https://www.youtube.com/watch?v=UBnOAxaxdlI

  'How a sex worker helps my wife and I maintain good sexual health', David Heckendorf, The
   Sydney Morning Herald, Daily Life, 12 April 2016. Online:
     http://www.smh.com.au/lifestyle/life-and-relationships/sex-and-relationships/how-a-sex-
    worker-helps-my-wife-and-i-maintain-good-sexual-health-20160411-go3koh.html

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