NDIA Accountability Project

Supporting people with disability: sexuality, sexual health and relationships

‹ PrevPage 1 of 30 · Source p. 1Next ›

SECCA submission to

the Joint Standing Committee on the National Disability Insurance Scheme - Inquiry into

                                                    May 2023

Committee Secretariat contact: Joint Standing Committee on the National Disability Insurance Scheme PO Box 6100, Parliament House, Canberra ACT 2600 ndis.joint@aph.gov.au

Who we are:

Sexuality Education Counselling and Consultancy Agency (SECCA) was founded in 1991 in Western Australia by a small group of professionals working in the wellbeing sector, hose own lives involved people with a disability. The focus was to eliminate the gap in education and therapeutic support for people with disability regarding their sexuality, sexual health, and relationships. We aim to expand knowledge and understanding of issues relating to sexuality and healthy relationships for people with disabilities, with a view to increasing safety, autonomy, and life-enriching experiences.

Why we are writing:

SECCA has been supporting people with disability, and their significant carers for three decades. Our expertise in education, counselling, and consultancy in relation to human sexuality, sexual health, and relationships (see Appendix 1) puts us in the unique position to provide the Joint Standing Committee with the relevant background information and lived experience in relation to sexual services and support for people with a disability, and thus accurately assess the capability and culture of the NDIA in this context.

                                                         Signatures of Support:

                                               Birds and Bees – Jodi Rodgers, Owner
                                      Consentability, Dr Natasha Alexander, Founder
                  Family Planning Tasmania – Jodie Stevenson, Education Manager
          Family Planning Welfare Association NT – Maari Gray, Education Manager
             Sexual Health Quarters – Francis Townsend, Coordinator – Counselling
                   Sexual Health Victoria – Caroline Mulcahy, CEO (Letter attached)
                         Thrive Rehab – Anita Brown-Major, Occupational Therapist
                       True – Natasha Milner, Education Coordinator – Disability

                                 0

WE ACKNOWLEDGE THE WHADJUK PEOPLE, TRADITIONAL CUSTODIANS OF THE LAND ON WHICH WE LIVE AND WORK, AND RECOGNIZE THAT THESE LANDS HAVE ALWAYS BEEN PLACES OF LEARNING FOR ABORIGINAL AND TORRES STRAIT ISLANDER PEOPLES. WE PAY OUR RESPECTS TO THEIR ELDERS PAST AND PRESENT - AND ACKNOWLEDGE THE LAND WAS NEVER CEDED – ALWAYS WAS, ALWAYS WILL BE.

WE ALSO RECOGNISE THE DIVERSE SEXUALITIES, GENDERS AND LIVED EXPERIENCES OF ABORIGINAL AND TORRES STRAIT ISLANDER PEOPLE AND THEIR CONTRIBUTIONS TO OUR SHARED LEARNING.

                            1

Table of Contents

Executive Summary ……………………………………………………………………………………………………. 4

Summary of Recommendations ……………………………………………………………………………….. 4

1.0 Introduction …………………………………………………………………………………………………………. 6

2.0 Legislation ……………………………………………………………………………………………………………. 7

3.0 Research ……………………………………………………………………………………………………………… 9

3.1 Education and Knowledge ………………………………………………………………………………….. 9

3.2 Mental and Physical Health ………………………………………………………………………………. 10

4.0 Concerns and Considerations ……………………………………………………………………………….. 11

2.1 Privacy and Confidentiality ……………………………………………………………………………….. 11

2.2 Self-Determination ………………………………………………………………………………………….. 12

2.2.1 Case Study – ‘C’ ………………………………………………………………………………………… 12
2.2.2 Case Study – ‘D’ ………………………………………………………………………………………… 13

2.3 Sexual Health ………………………………………………………………………………………………….. 13

2.3.1 Case Study – ‘E’ …………………………………………………………………………………………. 14
2.3.2 Case Study – ‘F’ …………………………………………………………………………………………. 14

2.4 Sexual Rights …………………………………………………………………………………………………… 14

2.4.1 Case Study – ‘G’ ………………………………………………………………………………………… 15
2.4.1 Case Study – ‘H’ ………………………………………………………………………………………… 15

2.5 Complexity of Needs………………………………………………………………………………………… 16

2.5.1 Case Study – ‘I’ ………………………………………………………………………………………….. 16

5.0 Recommendations ………………………………………………………………………………………………. 18

6.0 Conclusion …………………………………………………………………………………………………………. 22

7.0 References …………………………………………………………………………………………………………. 23

8.0 Appendix 1 …………………………………………………………………………………………………………. 27

Website Analytics: ………………………………………………………………………………………………… 27

Annual Story 2022 ………………………………………………………………………………………………… 29

                                 2

Acronyms

  • CSE: Comprehensive Sexuality Education
  • FCA: Functional Capacity Assessment
  • FDV: Family and Domestic Violence
  • IUD: Intrauterine Device
  • NDIA: National Disability Insurance Agency
  • NDIS: National Disability Insurance Scheme
  • PWOD: Person without Disability
  • SECCA: Sexuality Education Counselling and Consultancy Agency
  • STI: Sexually Transmitted Infection
  • UN: United Nations
  • UNCPRD: United Nations Convention on the Rights of Persons with Disabilities
  • WAS: World Association for Sexual Health
  • WHO: World Health Organization

Executive Summary

Sexuality Education, Counselling, Consultancy Agency (SECCA) is a not-for-profit organization designed to support people with disability to learn about human relationships, sexuality, and sexual health (see Appendix 1). We adhere to the understanding of sexual health laid out by the World Health Organization (WHO) ^4, treatment of people with disability as per United Nations Convention on the Rights of Persons with Disabilities (UNCRPD)$ ^1, and World Association of Sexual Health (WAS) Declaration of Sexual Rights$^ ^34, and their Declaration on Sexual Pleasure$^ ^27. These documents align with the National Disability Insurance Scheme (NDIS) commitment to participants$ ^2, and the general principles of the NDIS Act$^ ^3. SECCA affirms research highlighting the educational benefits of comprehensive sexuality education (CSE) for all people. The benefits of CSE including reduction in family and domestic violence (FDV) and coercive control, higher relationship self-efficacy and sexual knowledge, as well as lower rates of unwanted pregnancy, sexually transmitted infections (STIs)^6,$^ ^13,$^ ^17,$^ ^21,$^ ^22,$^ ^23,$^ ^24. SECCA also acknowledges the link between healthy and fulfilling sexual health and relationships and a person’s mental and physical health^5,$^ ^16, and confirm that due to the high rates of FDV for people with disability they are at greater risk of mental and physical health issues^10.

SECCA recognises that there have been multiple instances where NDIS/NDIA have impinged on the privacy and confidentiality, sexual health, sexual rights, and self-determination of people with disability. This in addition to the complexities that can occur supporting people with disability has created some largely negative experiences for people with disability and are in direct contravention of the NDIS legislation. SECCA therefore provides the following recommendations to ensure adherence to best-practice and all relevant legislation, whilst ensuring that people with disability are supported to live a healthy and fulfilled sexual life.

Summary of Recommendations

  • Sexuality, gender, and relationship to be added to standardised FCA utilised by all NDIS service providers and NDIA in co-design with people with disability.
  • Higher funding for social support as supported by literature confirming the benefits for overall mental and physical health.
  • NDIS plans to include a sexuality and relationships section for goals for all participants as it is a necessary and vital component and right for all people; with people with disability having co-design input on the goals within this section.

  • Protection of sexuality education for all people with disability by NDS,

    supplementing lack of knowledge with appropriate funded support services.

  • Adherence to the WAS declaration of sexual rights including amendments to

    relevant policies and procedures to ensure these rights are attainable for all people

    with disability.

  • Simplified access to sexual aids for all people with disability over the age of 18 that

    maintains their dignity, respect, and privacy.

  • Appropriate access to sex workers for all people with disability over the age of 18

    that maintains their dignity, respect, and privacy.

  • Reasonable expectations of the time, resources, energy, and capacity of family

members, carers, or support workers in relation to advocacy.

  • Complex case managers who can intervene in situations to ensure a harm

minimisation approach is taken to sexuality and relationships that protect the

people with disability and others.

  • Promotion of LGBTQIA+ inclusion in reproductive and sexual health care and

    sexuality services to ensure people with disability who are members of the

LGBTQIA+ can accurately provide informed consent.

  • Introduction of universal sexuality attitudes and values training to highlight the

    value and importance of sexual rights of people with disability for all NDIS/NDIA

approved workers.

  • NDIS/NDIA and their approved service-providers must have a dedicated sexuality

    and relationships policy that enshrines the sexual and relationship rights for all

participants.

1.0 Introduction

Sexuality Education, Counselling, Consultancy Agency (henceforth SECCA, or ‘the agency’) endeavours to deliver impactful, current sexuality and relationship support that is relevant to people with disability, and their carers. We believe this will empower people with disability to thrive in richer, safer relationships. Our mission aligns with the purpose of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) by reinforcing the “…full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities”1, as well as the National Disability Insurance Scheme (NDIS) commitment to participants helping provide people with disability a “…greater choice and control over how they want to live their life”2 and “support the independence and social and economic participation of people with disability”3. Therefore, SECCA is in a position that allows for strong knowledge, understanding, and advocacy when reviewing the implementation, performance, governance, administration, and expenditure of the NDIS in relation to capability and culture of the National Disability Insurance Agency (NDIA) and the experiences of people with disability accessing NDIA services, information, and support (see Appendix 1).

The unique services that SECCA offer people with disability allow for a deep understanding of sexuality-based capability and cultural issues affecting people with disability. Therefore, the following report will provide a breakdown of the legislative requirements of NDIS related to sexuality and sexual health, along with recent empirical evidence in relation to sexuality and disability leading to the vital concerns and considerations for sexual health, sexuality, and relationships for people with disability including de-identified case studies to highlight the current issues and barriers people with disability are experiencing. Finally, we will provide our recommendations for the NDIA based on the literature and our client examples and concerns.

2.0 Legislation

The following extracts from the NDIS Act (2013) support the choice, and access to sexual aids, supports, education, knowledge about risks, sexual healthcare, and an environment that protects and promotes sexual health4 for all people including those living with a disability. They function as a reminder of the purpose of NDIS, NDIA, and all related services and supports for people with disability.

“3 Objects of Act3 (c) support the independence and social and economic participation of people with disability; and (d) provide reasonable and necessary supports, including early intervention supports, for participants in the National Disability Insurance Scheme; and (e) enable people with disability to exercise choice and control in the pursuit of their goals and the planning and delivery of their supports; and (g) promote the provision of high quality and innovative supports that enable people with disability to maximise independent lifestyles and full inclusion in the community;

(ga) protect and prevent people with disability from experiencing harm arising from poor quality or unsafe supports or services provided under the National Disability Insurance Scheme.“

Page 9

(8) People with disability have the same right as other members of Australian society to be able to determine their own best interests, including the right to exercise choice and control, and to engage as equal partners in decisions that will affect their lives.

(9) People with disability should be supported in all their dealings and communications with the Agency and the Commission so that their capacity to exercise choice and control is maximised in a way that is appropriate to their circumstances and cultural needs.

(9A) People with disability are central to the National Disability Insurance Scheme and should be included in a co-design capacity.

(10) People with disability should have their privacy and dignity respected.

(11) Reasonable and necessary supports for people with disability should: (a) support people with disability to pursue their goals and maximise their independence; and (b) support people with disability to live independently and to be included in the community as fully participating citizens; and (c) develop and support the capacity of people with disability to undertake activities that enable them to participate in the community and in employment.

(12) The role of families, carers and other significant persons in the lives of people with disability is to be acknowledged and respected.

(12A) The relationship between people with disability and their families and carers is to be recognised and respected.

(13) The role of advocacy in representing the interests of people with disability is to be acknowledged and respected, recognising that advocacy supports people with disability by: (a) promoting their independence and social and economic participation; and (b) promoting choice and control in the pursuit of their goals and the planning and delivery of their supports; and (c) maximising independent lifestyles of people with disability and their full inclusion in the community.

(14) People with disability should be supported to receive supports outside the National Disability Insurance Scheme, and be assisted to coordinate these supports with the supports provided under the National Disability Insurance Scheme.

(15) In exercising their right to choice and control, people with disability require access to a diverse and sustainable market for disability supports in which innovation, quility, continuous improvement, contemporary best practice and effectiveness in the provision of those supports is promoted.

(16) Positive personal and social development of people with disability, including children and young people, is to be promoted.”

3.0 Research

Sexuality, healthy relationships, sexual expression are inextricably linked to quality of life5,6,7,8,9,10 and are essential to the sexual health and wellbeing of all humans8,11. However, healthy sexuality is typically limited for people with disability due to stigma and excessive barriers6,12,13; including those imposed through the NDIS system. The misconception of disability as a ‘condition’ to be pitied, as with sexual aspects, reinforces a medical model of disability that victimises people with disability14. Thereby acting as an obstacle that removes an individuals’ agency and capacity to function and explore their full range of life experiences, particularly their sexuality. The impact of a continued system of control over sexual aspects within the lives of people with disability has a broad range of consequences from education and knowledge, mental health, and physical health implications.

3.1 Education and Knowledge

Young people in Australia with intellectual disability report that their sexuality education has been ineffective12,15,16,17. The lack of comprehensive sexuality education (CSE) for people with disability reduces their self-determination and capacity to make informed decisions about their sexual health17, and increases the risk of sexually transmitted infections (STIs), and sexual abuse18. Delaying sexuality education reinforces a sex-negative framework and ignores potential harm minimisation strategies leaving people with disability to be in ‘crisis’ before addressing this need7. Research highlights that sexuality education for people with disability include gender, healthy relationships, sexuality norms and assumptions17, sexual autonomy, hygiene13, non-heteronormative relationships, intimacy, making friends, and starting conversations6 at a minimum. Providing a strong confirmation of CSE as best-practice for all people, and people with disabilities are no exception.

The breadth of topics within CSE allows for the development of higher self-efficacy and informed decisions about their health and wellbeing17. Research shows improved decision-making, sexual knowledge, protective behaviours, higher self-esteem, knowledge of their sexual rights and responsibilities17, healthy relationships, and self-efficacy related to identifying red flags in dating13. Exclusion from adequate sexuality education therefore leads to a lack of opportunity to understand the sexual and romantic relationships, and safe sex; which is associated with higher rates of family and domestic violence (FDV)19,20, including coercive control, and higher rates of unwanted pregnancy and STIs 21,22,23,24. It should be noted that parental education related to sexuality is also vital to ensuring people with disability are supported and provided accurate information in sexuality-based topics7,25.

Research Findings

These research findings highlight the criticality of availing all NDIS participants the choice to have sexuality counsellors and educators built into NDIS plans regardless of type of disability or age of participant.

Mental and Physical Health

WHO affirm that sexual health is interlinked with overall health and wellbeing of all peoples and encompasses pleasure, safety, and a “…positive and respectful approach to sexuality and sexual relationships4”. The World Association for Sexual Health (WAS) supports this holistic view of sexual health, confirming the requirement for self-determination, consent, privacy, open communication, and pleasure in positive sexual health and wellbeing experiences26. WAS states that “the possibility of having pleasurable and safe sexual experiences free of discrimination, coercion, and violence is a fundamental part of sexual health and wellbeing for all27”. The United Nations (UN) Population Fund champions an inclusive approach to healthcare that ensures equality of optimal health for all people28.

Therefore, the consideration of mental and physical health should be applied to the topic of sexuality and relationships.

Empirical literature supports this inclusive approach to sexuality and relationships, and has found strong relationships between a person’s mental and physical health and their interpersonal relationships (platonic, sexual, and romantic)16. Research by Blacks and Kammes5 found evidence that for typically developing couples, those in intimate relationships had stronger cardiovascular health, sleep patterns, and longevity, as well as lower rates of depression and anxiety. Although, people with disability experiencing FDV struggle to live independently and maintain optimal physical and mental health16. Studies show that people with disability experience sexual dissatisfaction and dysfunction regularly10; in direct contravention to the expectations of sexual health outlined by the UN, WAS, and WHO. Gatekeeping whilst is common29, should be rejected in favour of inclusive treatment of people with disability that adheres to the obligations of duty of care, human rights, sexual rights – lawful, ethical, and equal care30. With a focus on person-centred care30, people with disability deserve regular and ongoing access to sexual health education, and relationship support through counselling and education. Again, supporting the value of sexuality counsellors and educators being built into NDIS plans for all participants and their caregivers regardless of type of disability or age of participant.

4.0 Concerns and Considerations

The following section details background concerns and considerations in relation to sexuality and disability. Where useful, de-identified case studies will be provided to highlight the real-life examples of deficiencies in support for NDIS participants that SECCA have experienced. Please note, these case studies are not exhaustive, however, should provide a background to understanding the issues arising for our client’s and their families, as well as potential ramifications of their sexuality needs being ignored, not met, or rejected.

2.1 Privacy and Confidentiality

Privacy and confidentiality are protected under the Privacy Act 198831, article 22 of the UNCRPD reaffirms this protection including that they are not “…subjected to arbitrary or unlawful interference with his or her privacy32”. This protection can be overridden by effective documentation requesting copious amounts of data and validation to be provided with a sexual aid that is accessible to the individual. For people with disability, the initial documentation is excessive and contains many private details that may require that people with disability to reveal their sexual orientation, gender and sexual preferences in official documentation when they are not out, or cannot come out to people within their lives. Examples highlighting SECCA’s concerns related to NDIA (specifically guiding principle 103) and privacy include:

2.1.1 Case Study – ‘A’

‘A’ was referred to SECCA due to sexual behaviours of concern. Unfortunately, due to a lack of standardised referral forms and guidelines, the referral agency provided identifying information about a person related to the incident who was not the client they were referring to SECCA. This breached the privacy of the other person involved in the incident.

2.1.2 Case Study – ‘B’

’B’ was referred to address masturbatory behaviour that had been occurring in public places in their group home. Upon triaging it was identified that ‘B’ understood the difference between public and private, but they were never given time alone to masturbate in private places. Due to their disability, their dexterity does not allow for ease or independence to masturbate. When ‘B’ had asked support for assistance to purchase a sexual aid they were shut down for asking inappropriate questions and referred for counselling to reduce their

Sexual Health Needs in NDIS

Inappropriate Rejection of Funding Request

sexual desires. SECCA worked with ‘B’ to support their sexuality and reiterate that it is not inappropriate to ask for help to access resources to assist that. After working with support staff to explain sexual rights and their role to appropriately support the sexuality of clients, B was able to apply for a sexual aid with their NDIS funding. Application included details on the exact sexual toy being requested, why it was being requested, and how this would work for ‘B’. This level of detail is unnecessary and represents a distinct difference between a person without a disability (PWOD) who can securely and privately order a sexual toy to help them achieve their sexual health needs in discrete package. Funding for the sexual aid was then ultimately rejected as NDIS deemed it not necessary despite the health benefits. ‘B’ is still unable to access the support they need or have their sexual rights fulfilled adequately because of this denial.

Self-Determination

Individual autonomy and choice were ratified in the UNCRPD, as well as opportunity equality and acknowledging the diversity in people with disability, their experiences, and their wants and needs33. The efficacy of this self-determination is reduced for NDIS participants throughout various stages in the process including initial application, and the need for extensive justification of services and aids. Within sexuality and disability, people with disability have their self-determination and freedom of choice further limited by NDIA. This includes but is not limited to the people with disability’s choice of therapist, unknown funding changes impacting treatment accessibility, and when to stop and start specific therapies. As sexuality is not explicitly a category on a participant’s NDIS plan services for people with disability are limited, training for professionals is limited and generally requires multiple university and training courses, and upskilling and professional learning opportunities are scarce. This reduces the number of trained sexuality counsellors and educators and therefore the number of possible services, and the length of their individual wait lists extensively. Examples highlighting SECCA’s concerns related to NDIA (specifically general principles 1, 2, 4, 7, 8, 9, 11, 12, 14, and 153) and self-determination include:

Case Study – ‘C’

‘C’ commenced sessions with SECCA for support around developing healthier and informed ways of expressing their sexuality and sexual arousal. ‘C’ expressed feelings of arousal related to individuals under the age of consent and expressed urges to act upon these feelings. As such, ‘C’ required consistent and focused individual counselling sessions at

Case Study – ‘C’

SECCA to support their therapeutic goals, to keep themselves, and the community, safe. ‘C’ attended weekly, then fortnightly sessions, and used the funds available in their NDIS plan. At the time their NDIS funds were used up, there was a several months wait before their plan review. This scenario placed ‘C’ at risk of not receiving therapeutic input at a crucial 时间 in their therapeutic journey. SECCA was only able to mitigate this risk and meet this gap by continuing to see ‘C’ using funding from other means intended for emergencies and client cries.

Case Study – ‘D’

‘D’ was referred for support with sexuality education following conviction of sexual offending behavior. Upon triaging, key support identified that to adhere to culturally safe protocols, that ‘D’ required counselling by a male clinician. SECCA has no male-identifying clinician on staff and so we were unable to intake him into our service. We provided a recommendation for generalist sex therapists who are male; however, to our knowledge, they have no specialist training in working with people with disability. We also provided referral recommendations to local Aboriginal-led social and emotional wellbeing services; however, to our knowledge, no clinicians at this service have specialist skills in sexuality education. Therefore, ‘D’ has been unable to receive support from a clinician of choice, nor receive appropriate psycho-education and counselling.

Sexual Health

As previously discussed, sexual health is a holistic concept incorporating education, sexuality, freedom of gender expression, and freedom from coercion and abuse4. The omission of sexuality and relationship from NDIS plan goals can reduce the capacity of services such as SECCA to provide vital support services to people with disability and increase the risk of mental and physical health issues5,10,16 and FDV16,19,20. Social relationships that are not necessarily sexual are also impacted due to low social funding, despite the vital nature of these skills and their mental and physical health benefits. Further to this Functional Capacity Assessments (FCAs) are not inclusive of gender and sexuality, thereby people with disability are left without necessary care as their support needs are based off an FCA missing critical components to overall health and wellbeing. Cisnormative, heteronormative, and Asexual stereotypes damage informed consent capacity of a people with disability’s experience, if they are a member of the LGBTQIA+ community. Examples

Page 15

highlighting SECCA’s concerns related to NDIA (specifically guiding principle 1, 5, 6, 14, and

  1. and sexual health include:

    2.3.1 Case Study – ‘E’

    ‘E’ began working with SECCA when they were 16 years of age. Both parents were not affirming of their gender and actively threw out clothing which they felt were not appropriate for their assigned sex at birth. Family education was attempted, however, the family were adamant it was a ‘phase’. ‘E’ was suffering from extreme distress due to dysphoria and experiencing bullying and harassment at school they were not equipped to handle. This was impacting on their overall mental health, however, their family made the decision to abruptly end sessions with SECCA. Whilst attempts were made to ensure that ‘E’ were safe and well, due to the lack of specified funding for sexual health and related counselling, they were at the mercy of their parents and their mental health and wellbeing is currently unknown.

    2.3.2 Case Study – ‘F’

    ‘F’ was sent to SECCA for support by their parents at a point of crisis. They reported that their child ‘F’ (a teenager) had demonstrated harmful sexualised behaviours toward their sibling. Understandably, their parents were concerned for the impact of the incident upon the sibling and were anxious to prevent ‘F’ from acting on their urges again. The SECCA counsellor identified in an initial counselling session with ‘F’ that they had received very limited relationship and sexuality education to date, and in their opinion, this was a key aspect of why ‘F’ had engaged in this type of behavior. For example, when asked, ‘F’ had no prior knowledge of the convention that siblings and family members could not have sexual contact and that this was inappropriate and illegal. ‘F’ shared that no one had explained this to them before. In this scenario, if ‘F’ had had guaranteed access to CSE at an earlier point, they would have been well-positioned to make healthy and safe choices about their sexual expression and the victimisation of their sibling could have been prevented.

2.4 Sexual Rights

WAS sets out 16 sexual rights that are required for "the highest attainable sexual

health…34“. These include the right to equality, bodily autonomy, freedom from violence, privacy, information, highest standard of health – including sexual health, sexuality

14

education, full participation in public and private life, and freedom of expression34.

Adhering to these rights would require a fundamental review of current NDIA policies and procedures to ensure autonomy is provided to the people with disability and family members, carers, and support worker preferences are not being placed over the choices of the people with disability. Changes are also required around the use of sex workers, and the documentation required to obtain sexual aids as a people with disability. Beyond an attitudinal change, a systemic and structural change is also required to change how we consider and provide access and services to people with disability. Ensuring transportation, medication, and true informed consent were factored into decision-making for funding and support. Examples highlighting SECCA’s concerns related to NDIA (specifically guiding principle 2, 4, 5, 6, 8, 13, 14, and 163) and sexual rights include:

  • Case Study – ‘G’

’G’ (aged in their 50s) was referred to SECCA by their support worker as the client had expressed a desire to engage a sex worker. ’G’ was provided with sex education and both client and support worker provided information on steps and considerations to engage a sex worker. The support worker identified that as ‘G’s’ father was their legal guardian, their father would need to make final approval for the client to access the funds to see a sex worker. The client did not have a sexual health related goal in their NDIS plan, and would need to pay out of their existing personal budget funds. SECCA offered a consultation to provide education, context and address any barriers or concerns of the legal guardian, however this offer was not taken up. The support worker identified that she would advocate on behalf of her client to their father; the support worker expressed concern that despite the client’s new found skills and knowledge, they may not be approved to access a sex worker based on the values and perspectives of their legal guardian denying ‘G’ the “right to the highest attainable standard of health…with the possibility of pleasurable, satisfying, and safe sexual experiences”.

  • Case Study – ‘H’

’H’ began working with SECCA to understand their sexual health and rights. Upon intake it was made known that ‘H’ had been forcibly sterilized without their knowledge. ‘H’ only discovered that they had an Intrauterine Device (IUD) when a support worker was able to advocate for an ultrasound on their stomach. This process took an extended amount of time as their concerns were originally dismissed by multiple partners including their Guardian. Following the discovery of the IUD in ultrasound it was surmised that the IUD had

Complexity of Needs

It is important to acknowledge that people with disability are not a homogenous group and have intersectional characteristics, and complex experiences that can compound and require the coordination of multiple services in relation to sexuality and relationships. In these instances, people with disability are often dehumanised and expected to wait extended periods of time before assistance is provided. The expectation of their families, carers, or support workers are often arduous and this can lead to the people with disability not getting the support they need due to extra paperwork or coordination the families, carers, or support workers do not have the capacity to organise or complete. The individual with a disability is therefore left to ‘fall through the cracks’ and typically result in ‘crisis’ situations that could have been avoided with appropriate care and support.

Examples highlighting SECCA’s concerns related to NDIA (specifically guiding principle 5, 7, 8, 9, 13, and 143) and complexity of needs include:

Case Study – ‘I’

‘I’ began working with SECCA after they had been online dating for a prolonged period. During this time prior to engaging with SECCA, due to inadequate education and lack of supports they were sexually assaulted multiple times. The complex nature of their issues required the coordination of three different agencies. The funding to assist ‘I’ took nine months to one year to approve and required significant extra paperwork from SECCA, and their supports. The supports in this instance were able to endure the extra burden of the time, energy, resources, and capacity, as well as the want to help ‘I.’ However, this left ‘I’ continuing to engage in online dating during these nine months to one year, without adequate support, negatively affecting their mental health and increasing likelihood of experiencing sexual violence. ‘I’ has recently struggled to gain acceptance into a minimally costed disability speed dating event that could provide extreme benefit to them due to extended bureaucracy between plan managers, NDIA, and their Guardian leading to them missing one safe dating opportunity thus far.

2.5.1 Case Study – ‘J’’

‘J’ (25yo) began individual counselling sessions with SECCA for supportive and trauma-informed psychological therapy to address the impact of sexual victimization on their mental health, wellbeing, and relationships.

Early in the course of sessions, the clinician observed that their parents were eager to spend time during sessions advocating that the clinician intervene to modify their sensory stimulating actions and movements. The parents were critical of their preference to stand and move their body in stimulating ways that posed no risk of harm to ‘J’ or other people. Their parents stated that they were concerned ‘J’ did not look “normal”. This presented an excellent opportunity for the SECCA clinician to provide education to their parents on affirming neurodiversity and their rights and needs. This is a typical example of a dynamic we observe where the individual with disability is identified as the ‘site of change’ or intervention, when in fact drawing on our models of neurodiversity affirming approaches, and human rights model of disability, we identified that the people around ‘J’ required support to adapt their perspectives.

5.0 Recommendations

  • Sexuality, gender, and relationship to be added to standardised FCA utilised by all

    NDIS service providers and NDIA in co-design with people with disability.

    Providing a standardised FCA that allows for the incorporation of sexuality, gender,

    and relationships acknowledges the value of these factors on the health and

    wellbeing of people with disability. The integration also ensures that a person’s

    sexual needs, health, and rights are protected and will be supported as part of their

NDIS plan. This aligns with the NDIS general principles 1, 2, 3, 4, 5, 8, 9, 11, 13, 14,

15, 163.

  • Higher funding for social support as supported by literature confirming the

    benefits for overall mental and physical health.

Seeing sexual relationships as a form of social support ensures that they are

validated for their impact on mental and physical health. The funding provides the

ability for people with disability to achieve their full potential for physical, social,

emotional, and intellectual development (general principle 1)3. The funding for

social support also needs to be consistent and protected to ensure that the capacity

for this social support is not restricted with little warning due to the ongoing mental

and physical health benefits of this type of support. This also aligns with the NDIS

general principles 2, 3, 4, 5, 6, 7, 8, 9, 11, 12, 14, 15, 163.

  • NDIS plans to include a sexuality and relationships section for goals for all

participants as it is a necessary and vital component and right for all people; with

people with disability having co-design input on the goals within this section.

A specific section for sexuality and relationships in a participant’s NDIS plan,

including goals ensures that people with disability are provided with the

acknowledgement of their sexuality, sexual rights, and the importance of their

sexual health. This recognition may also help reduce stigma around sexuality and

relationships for people with disability and promote the growth of more funding,

support, training, and ultimately sexual support services for people with disability.

Therefore, this aligns with the following general principles of the NDIS (1, 2, 3, 4, 5,

6, 8, 9, 11, 12, 13, 14, 15, 16)3.

Protection of Sexuality Education

Recommendation 4: Protection of sexuality education for all people with disability by NDS,

supplementing lack of knowledge with appropriate funded support services.

To protect the sexual health and rights of people with disability it is understood that CSE is required. The NDIA promoting this need within schools, and educational services will reinforce the importance and provide support for the value and inclusion of people with disability in CSE. This recommendation also needs to acknowledge that current sexuality education for many may have been insufficient and thus services and funding is required to ensure that people with disability are able to access this information and knowledge to protect their sexual health and rights through their NDIS funding and plan. This aligns with the following general principles of the NDIS (1, 2, 3, 4, 5, 6, 7, 8, 9, 11, 12, 13, 14, 15, 16)

Recommendation 5: Adherence to the WAS declaration of sexual rights including amendments to relevant policies and procedures to ensure these rights are attainable for all people with disability.

Enshrining the declaration of sexual rights into policy within NDIA protects these rights for people with disability and ensures that they are considered when making decisions for the NDIS and the participants. The act of this also provides a strong message to NDIS service providers, and the general public that people with disability are to be afforded the same sexual rights as all people. Again, this can reduce the misinformation, negative stereotypes, and stigma associated with disability and sexuality. Therefore, this aligns with the following general principles of the NDIS (1,

2, 3, 4, 5, 6, 7, 8, 9, 11, 12, 13, 14, 15, 16)3.

Recommendation 6: Simplified access to sexual aids for all people with disability over the age of 18 that maintains their dignity, respect, and privacy.

As above, the provision of sexual aids for people with disability over the legal age of 18 is necessary to help the person maintain their sexual rights, as well as ensure they are able to lead fulfilling sexual lives. Ensuring this process is streamlined and does not reinforce sex-negative perspectives is necessary to achieve NDIS commitment to its participants. Details should be as minimal as possible to adhere to privacy and confidentiality standards and maintains the dignity of people with disability. This aligns with the following general principles of the NDIS (1, 2, 3, 4, 5, 6, 8, 9, 10, 11,

12, 13, 14, 15, 16)

7. Appropriate access to sex workers for all people with disability over the age of 18

that maintains their dignity, respect, and privacy.

As above, the provision of sex workers for people with disability over the legal age of

18 can be necessary to help the person maintain their sexual rights, as well as

ensure they are able to lead fulfilling sexual lives. Ensuring this service is funded and

supported eliminates sex-negative perspectives and helps achieve the NDIS

commitment to its participants. Details required to authorise such services should

be as minimal as possible to adhere to privacy and confidentiality standards and

maintains the dignity of people with disability. This aligns with the following general

principles of the NDIS (1, 2, 3, 4, 5, 6, 8, 9, 10, 11, 12, 13, 14, 15, 16)3.

8. Reasonable expectations of the time, resources, energy, and capacity of family

members, carers, or support workers in relation to advocacy.

The case studies above, particularly for ‘I’ reinforce the need for streamlined and

efficient NDIS processes to ensure that people with disability who have minimal

supports, or supports who are experiencing pressures from other aspects of life are

provided with the same care, consideration, and NDIS support as all other

participants. This may require a review of existing documentation standards,

policies, and procedures. However, it is vital that all participants are provided with

the same standard of care and support regardless of the capacity of their family,

friends, or carers. This aligns with the following general principles of the NDIS (1, 2,

3, 4, 5, 6, 7, 8, 9, 11, 12, 13, 14, 15, 16)3.

9. Complex case advocacy managers who can intervene in situations to ensure a

harm minimisation approach is taken to sexuality and relationships that protect

the people with disability and others.

As an extension of the above recommendation, there may be the need for someone

outside of the family or current support system of the NDIS participant to advocate

on their behalf. There may also be times where family members are not working to a

harm minimisation approach and may be inhibiting the rights of the NDIS

participant. It is for purpose a complex case advocacy manager should be provided

for these participants, from an external agency, to provide support and advocate on

behalf of the person with disability. This aligns with the following general principles

of the NDIS (1, 2, 3, 4, 5, 6, 7, 8, 9, 11, 12, 13, 14, 15, 16)3.

10. Promotion of LGBTQIA+ inclusion in reproductive and sexual health care and

sexuality services to ensure people with disability who are members of the

LGBTQIA+ can accurately provide informed consent.

Acknowledging the value of peoples’ intersectionality, SECCA notes that there are

people with disability who are members of the LGBTQIA+ community and due to

ehetero- and cisnormativity appropriate information, knowledge, and training may

not be provided to those who support them. Informed consent therefore is often

not provided to people with disability related to risks of STIs, and details on how to

live fulfilling sexual lives as an LGBTQIA+ person. NDIA should acknowledge the

implication of this, and ensure that NDIS plans, funding, and support are provided to

these participants to afford them the same sexual rights as other people. This aligns

with the following general principles of the NDIS (1, 2, 3, 4, 5, 6, 7, 8, 9, 10, 11, 12,

13, 14, 15, 16)3.

11. Introduction of universal sexuality attitudes and values training (Sexual Attitude

Reassessment [SAR]) to highlight the value and importance of sexual rights of

people with disability for all NDIS/NDIA approved workers.

Due to the ongoing stigma, sex-negative culture, and misinformation related to

sexuality and disability, it is recommended that all services and their employees

attend a SAR to ensure they gain the benefits of expanded knowledge,

understanding, and perceptual shifts that lower stigma and may reduce non-sex

related communication barriers, creating more well-rounded healthcare and quality

of life for people with disability. This aligns with the following general principles of

the NDIS (1, 2, 3, 4, 5, 6, 7, 8, 9, 11, 12, 13, 14, 15, 16)3.

12. NDIS/NDIA and their approved service-providers must have a sexuality and

relationships policy for all participants.

Policy and procedures are vital to ensuring cultural change and providing guidelines

for workplace behaviours. Dedicated sexuality and relationships policies for

NDIS/NDIA and their approved service-providers promotes the importance of

sexuality in the lives of people with disability. It also provides reassurance that can

reduce stigma and increase supports, ensuring that any sexuality based issues are

able to be resolved prior to becoming a ‘crisis’. This aligns with the following general

principles of the NDIS (1, 2, 3, 4, 5, 6, 7, 8, 9, 11, 12, 13, 14, 15, 16)3.

6.0 Conclusion

Currently NNDIS participants are left with minimal support related to their sexual health and rights. SECCA has observed a strong trend where people with disabilities often endure crises, people with disability placing them at risk of, or in many cases setting the conditions for their experience of, abuse, assault, and harm. The importance of comprehensive, consistent sexuality education for all people is well documented and the critical nature of freedom of expression in relation to sexuality is also supported by empirical literature. For people with disability to be able to participate in society with agency and control the NDIA needs to recognise and support sexual health and sexual rights for people with disability, and this includes implementing the recommendations provided in this report. True inclusion of sexuality throughout the NDIS plan, will allow for the growth of sexuality services for people with disability and in turn the tangible and intangible benefits of improved mental and physical health, as well as lower rates of offending behaviours or FDV. The positive implications of these changes will be felt by people with disability, their families, carers, support workers, and other NDIS services.

                                22

7.0 References

[1] Australian Human Rights Commission [AHRC]. (n.d.). United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). https://humanrights.gov.au/our- work/disability-rights/united-nations-convention-rights-persons-disabilities- cuncrpd#:~:text=The%20purpose%20of%20the%20United,respect%20for%20their%20inhere t%20dignity.

[2] National Disability Insurance Scheme [NDIS]. (n.d.) Out commitment to participants. https://www.ndis.gov.au/about-us/careers-ndia/our-commitment- participants#the-participant-service-charter-and-participant-service-guarantee-psg

[3] National Disability Insurance Scheme Act 2013 (Cth). https://www.legislation.gov.au/Details/C2022C00206

[4] World Health Organization [WHO]. (n.d.). Sexual health. https://www.who.int/health-topics/sexual-health#tab=tab_1

[5] Black, R. S., & Kammes, R. R. (2019). Restrictions, power, companionship, and intimacy: A metasynthesis of people with intellectual disability speaking about sex and relationships. Intellectual and Developmental Disabilities, 57(3), 212-233. https://doi.org/10.1352/1934-9556-57.3.212

[6] Chrastina, J., & Večeřová, H. (2020). Supporting sexuality in adults with intellectual disability — A short review. Sexuality and Disability, 38(2), 285-298. https://doi.org/10.1007/s11195-018-9546-8

[7] Pownall, J. D., Jahoda, A., & Patrick Hastings, R. (2012). Sexuality and sex education of adolescents with intellectual disability: Mothers’ attitudes, experiences, and support needs. Intellectual and Developmental Disabilities, 50(2), 140-154. https://doi.org/10.1352/1934-9556-50.2.140

[8] Stoffelen, J. M. T., Schaafsma, D., Kok, G., & Curfs, L. M. G. (2019). Views on Sex Using the nominal group technique to explore sexuality and physical intimacy in individuals with Intellectual Disabilities. Sexuality and Disability, 37(2), 227-244. https://doi.org/10.1007/s11195-018-9550-z

                                23

[9] VanHorn Stinnett, C., Plotner, A. J., & Marshall, K. J. (2021). The continuum of support for building intimacy knowledge in college for students with intellectual disability. Intellectual and Developmental Disabilities, 59(6), 472-486. https://doi.org/10.1352/1934- 10.1352/1934-9556-59.6.472

  [10] McGrath, M., Low, M. A., Power, E., McCluskey, A., & Lever, S. (2021). Addressing sexuality among people living with chronic disease and disability: A systematic mixed methods review of knowledge, attitudes, and practices of health care professionals. Arch Physical Medicine Rehabilitation, 102(5), 999-1010.

hhttps://doi.org/10.1016/j.apmr.2020.09.379

  [11] Mona, L. R., Cameron, R. P., & Clemency Cordes, C. (2017). Disability culturally competent sexual healthcare. Am Psychol, 72(9), 1000-1010.

hhttps://doi.org/10.1037/amp0000283

  [12] Sala, G., Hooley, M., Attwood, T., Mesibov, G. B., & Stokes, M. A. (2019). Autism and intellectual disability: A systematic review of sexuality and relationship education.

Sexuality and Disability, 37(3), 353-382. https://doi.org/10.1007/s11195-019-09577-4

  [13] Graff, H. J., Moyher, R. E., Bair, J., Foster, C., Gorden, M. E., & Clem, J. (2018). Relationships and sexuality: How is a young adult with an intellectual disability supposed to navigate? Sexuality and Disability, 36(2), 175-183. hhtps://doi.org/10.1007/s11195-017-

9499-3

  [14] Imrie, R. (1997). Rethinking the relationships between disability, rehabilitation,

and society. Disability and Rehabilitation, 19(7), 263-271. hhttps://doi.org/10.3109/09638289709166537

  [15] Carter, A., Strnadová, I., Watfern, C., Pebdani, R., Bateson, D., Loblinzk, J., Guy, R.,

& Newman, C. (2022). The sexual and reproductive health and rights of young people with Intellectual Disability: A scoping review. Sexuality Research Social Policy, 19, 372–390. hhttps://doi.org/10.1007/s13178-021-00549-y

  [16] Ward, K. M., Atkinson, J. P., Smith, C. A., & Windsor, R. (2013). A friendships and dating program for adults with intellectual and developmental disabilities: A formative evaluation. Intellectual and Developmental Disabilities, 51(1), 22-32.

hhtps://doi.org/10.1352/1934-9556-51.01.022

References

[17] McCann, E., Marsh, L., & Brown, M. (2019). People with intellectual disabilities, relationship and sex education programmes: A systematic review. Health Education Journal, 78(8), 885-900. https://doi.org/10.1177/0017896919856047

[18] Schmidt, E.K., Brown, C. & Darragh, A. (2020). Scoping review of sexual health education interventions for adolescents and young adults with Intellectual or Developmental disabilities. Sexuality and Disability, 38, 439–453 (2020). https://doi.org/10.1007/s11195- 019-09593-4

[19] Matin, B.K., Ballan, M., Darabi, F., Karyani, A.K., Soofi, M., & Soltani, S. (2021). Sexual health concerns in women with intellectual disabilities: A systematic review in qualitative studies. BMC Public Health, 21, 1965. https://doi.org/10.1186/s12889-021- 12027-6

[20] Gooding, P.M., & Kayess, R. (2022). Human rights and disability: An Australian experience. In P. Gerber & M. Castan (Eds.), Critical perspectives on human rights law in Australia volume 2. Thomson Reuters. http://dx.doi.org/10.2139/ssrn.4185514

[21] Allen, L. & Carmody, M. (2012) ‘Pleasure has no passport’: re-visiting the potential of pleasure in sexuality education, Sex Education. (12)4, 455- 468, https://doil.org/HYPERLINK “https://doi.org/10.1080/14681811.2012.677208“10.1080/14681811.2012.677208

[22] Braeken, D., & Cardinal, M. (2008). Comprehensive Sexuality Education as a means of promoting sexual health. International Journal of Sexual Health, 20(1/2), 50–62. https://doi.org/10.1080/19317610802157051

[23] Goldfarb, E.S., & Lieberman, L.D. (2021). Three decades of research: The case for Comprehensive Sex Education. Journal of Adolescent Health, (68)1, 13-27. https://doi.org/10.1016/j.jadohealth.2020.07.036

[24] Hocking, A. (2022). Intersectional complexities of coercive control. Parliamentary Library and Information Service. Melbourne, Parliament of Victoria. https://apo.org.au/node/317275

[25] Powell, R. M., Parish, S. L., Mitra, M., & Rosenthal, E. (2020). Role of family caregivers regarding sexual and reproductive health for women and girls with intellectual disability: A scoping review. Journal of Intellectual Disability Research, 64(2), 131-157. https://doi.org/10.1111/jir.12706

[26] World Association for Sexual Health [WAS]. (n.d.). World Association for Sexual Health: Homepage. https://worldsexualhealth.net/

[27] WAS. (2021). Declaration on Sexual Pleasure. https://worldsexualhealth.net/wp- content/uploads/2021/09/WAS-DECLARATION-ON-SEXUAL-PLEASURE-2021-.pdf

[28] United Nations [UN] Population Fund. (2009). Frameworks and policies on sexual and reproductive health. https://www.unfpa.org/sites/default/files/jahia- events/webdav/site/global/shared/documents/events/2009/policies_frameworks.pdf

[29] Alexander, N., & Gomez, M. T. (2017). Pleasure, sex, prohibition, intellectual disability, and dangerous ideas. Reproductive Health Matters, 25(50), 114-120. http://www.jstor.org/stable/26495937

[30] Dewson, H., Rix, K. J. B., Le Gallez, I., & Choong, K. A. (2018). Sexual rights, mental disorder and Intellectual disability: Practical implications for policy makers and practitioners. BJPsych Advances, 24(6), 386-397. https://doi.org/10.1192/bja.2018.40

[31] Privacy Act 1988 (Cth). https://www.legislation.gov.au/Details/C2014C00076

[32] UN. (2016). Article 22 – Respect for Privacy. UN Department of Economic and Social Affairs. https://www.un.org/development/desa/disabilities/convention-on-the-rights- of-persons-with-disabilities/article-22-respect-for-privacy.html

[33] UN. (2016). Article 3 – General Principles. UN Department of Economic development. https://www.un.org/development/desa/disabilities/convention-on-the- rights-of-persons-with-disabilities/article-3-general-principles.html

[34] WAS. (2014). Declaration of Sexual Rights. https://worldsexualhealth.net/wp- content/uploads/2021/09/declaration_of_sexual_rights_sep03_2014_b.pdf

8.0 Appendix 1

Website Analytics:

Number of Visitors to Resource Download Webpage

2500
      2102

2000

1500          1376  1293
                         1101
1000                             874   842
                                              662   627   585                                                              531                                                                   453   451
 500                                                                               377   312
                                                                                                192   178

0

Table 1. Location and number of SECCA Website Users by Filtered by Cities that have 50+ Users for the period 01/07/2022-30/04/2023

City State Country Users
Perth WA Australia 6464
Melbourne VIC Australia 1968
Sydney NSW Australia 1754
Brisbane QLD Australia 888
Adelaide SA Australia 735
Canberra ACT Australia 167
Ashburn Virginia United States of America 164
Kalgoorlie - Boulder WA Australia 131
Dublin Ireland 130
Forest City Malaysia 124
Geraldton WA Australia 118
Hobart TAS Australia 117
Karachi Pakistan 111
Busselton WA Australia 107
Geelong VIC Australia 91
Albany WA Australia 86
London United Kingdom 86
Newcastle NSW Australia 81
Gold Coast QLD Australia 76
Prineville Oregon United States of America 72
Bunbury WA Australia 70
Darwin NT Australia 59
Central Coast NSW Australia 54
Altoona Pennsylvania United States of America 51

Annual Story 2022

                                                     29