Sexual Health Information Project (SHIP)

What is the Program?

Developed in partnership with LGBTQ youth labelled with intellectual disabilities, reachOUT’s Sexual Health Information Project (SHIP) is a collaborative resource development project. SHIP is designed to raise awareness about the specific issues facing LGBTQ youth labelled with intellectual disabilities while reducing stigma and building capacity among participants.

Run out of Griffin Centre Mental Health Services in North Toronto, SHIP is part of the broader reachOUT program, which offers supports and services for LGBTQ youth. As part of reachOUT’s mandate to raise awareness of the issues faced by LGBTQ youth labelled with intellectual disabilities, SHIP engages youth in the creation of resources—including workshop modules, posters, brochures and a documentary. These resources are designed to increase visibility and reduce the isolation often experienced by LGBTQ youth labelled with intellectual disabilities. By engaging youth in the creation of such resources, the program allows participants to build self-confidence, communication skills and an increased sense of community, which, in turn, can empower them to make informed decisions about their lives, including decisions that can lower their risk for HIV and other sexually transmitted infections (STIs). By incorporating anti-oppression, anti-racism and sex-positive frameworks into its work, SHIP provides more accessible services for LGBTQ youth labelled with intellectual disabilities, while acknowledging the impact of multiple intersecting oppressions experienced by these communities.

A Note about Language

Language can be a powerful tool to challenge oppression and to engage community members. The language that reachOUT chooses to use is critical to our work. We work with people who have been labelled as “mentally retarded” or as having “developmental disabilities” or “learning disabilities.” In line with more progressive practice, we use the umbrella term ‘intellectual disabilities’ to include all of these labels.”

To draw attention to the fact that people are assessed and diagnosed within a psychological and psychiatric model, reachOUT prefers to describe people as “labelled with an intellectual disability.” This serves as a reminder that the people themselves may not agree with these labels or find them useful.

Further, rather than calling people “clients,” the team uses more empowering terms to refer to the youth who attend reachOUT programs. People who attend drop-in groups are referred to as “participants.” Some people labelled with intellectual disabilities who are active in community organizing refer to themselves as “self-advocates” and reachOUT often uses this term when talking about youth who are active or who take forms of leadership within their projects.

Finally, reachOUT has engaged four LGBTQ people labelled with intellectual disabilities to help guide their initiatives, including project direction, training and outreach. These individuals are referred to as “consultants” and they are paid a monthly honorarium for their involvement with the project.

These terms have been discussed in partnership with people labelled with intellectual disabilities and reflect the team’s collaborative values in working together.

~ Tess Vo, Supervisor of reachOUT and Community Connections

Acknowledgements:

CATIE would like to thank the reachOUT Consultants and staff for their advice and wisdom, and for their significant contribution towards the writing of this case study.

Why Was the Program Developed?

In 2005, reachOUT launched Compass, a weekly drop-in group designed to focus on the specific needs of LGBTQ youth labelled with intellectual disabilities, many of whom have unique challenges with adopting safer-sexual behaviours due to experiences facing multiple, intersecting oppressions and barriers to service access. Prior to the creation of Compass, many participants had not been exposed to sex-positive sexual health messages, let alone LGBTQ-specific information, as the sexuality of people labelled with intellectual disabilities (such as developmental disorders, Autism Spectrum Disorder and Asperger’s Syndrome) is routinely overlooked. (For recent research confirming the increased risk of contracting HIV and other STIs faced by LGBTQ youth labelled with intellectual disabilities, see Other Useful Resources.)

In addition to the weekly drop-in group, reachOUT offers community outreach, art, skills exchange, counselling and consultation services to other service providers on working with youth labelled with intellectual difficulties. These supports were designed to increase self-esteem among participants and to encourage people to make informed and healthy choices, including those regarding safer sex.

reachOUT engaged its participants in preparing workshop presentations for various forums to offer service providers who worked with people labelled with intellectual disabilities insight into the specific needs of LGBTQ people among the populations they served. Subsequently, some of reachOUT’s youth participants presented their experiences to other youth labelled with intellectual disabilities at various events. reachOUT values the meaningful involvement of the youth it works with in all aspects of programming and believes that this collaboration is critical to its success.

From 2008 to 2011, reachOUT received funding from the AIDS Prevention Community Investment Program to implement the Sexual Health Information Project (SHIP). This project combined the enhanced facilitation support of sexual health workshops and support groups already taking place at reachOUT with the creation of accessible and accurate sexual health resources for LGBTQ people labelled with intellectual disabilities, co-created by participants and staff. The funding also provided the initiative with the means to support six volunteers and two peer educators to develop resources.

Youth engagement in the developmental sector and in children’s mental health services are relatively new developments in Canada that have emerged out of work on youth participation, youth organizing and self-advocacy movements of people labelled with intellectual disabilities.

How Does the Program Work?

Location

SHIP is run within the reachOUT program at Griffin Centre Mental Health Services, a multi-service mental health agency providing flexible and accessible services to youth, adults and their families. The project could be run from any community centre or meeting facility with enough comfortable working space to accommodate participants.

Recruitment and engagement

Because people labelled with intellectual disabilities have often been connected to social services for much of their lives (either by choice or necessity), they frequently interact with agency staff on a regular basis. Consequently, the reachOUT program has found that the easiest way to connect with people labelled with intellectual disabilities is through networking with service providers in the developmental sector. Since Griffin Centre first spread the word about its initiatives for LGBTQ people within this sector, service providers working specifically with this group of people have gone out of their way to contact the Centre to attend trainings and to coordinate participation of members from their local communities.

A secondary means of reaching potential new participants is through peer referrals. Many reachOUT self-advocates attend multiple community events on their own time, travel significant distances to meet others labelled with intellectual disabilities, and contribute an energy and enthusiasm that significantly enhances the program’s ability to engage LGBTQ participants and build community. At the suggestion of reachOUT’s participants, having fun and meeting new people is always stressed as a core component of the program when introducing it to potential new members.

In addition, reachOUT has obtained funding to pay a modest honorarium of $125 per month to each of the four reachOUT self-advocates who have been particularly active in recruiting participants from among their peers. These consultants (as the paid self-advocates are called) meet for two to three hours each week with members of the staff team in order to play an active role in workshop development and facilitation, resource development, outreach activities and community events.

Creation of promotional materials

As a significant part of their work, participants (especially Consultants) are engaged in the creation of promotional materials that they feel will resonate with other LGBTQ youth labelled with intellectual disabilities. It is the creation of these promotional materials and other resources that forms the basis of the SHIP project.

The development of reachOUT’s first resources began with discussions between reachOUT staff and reachOUT consultants. These discussions took place as casual, interactive meetings with refreshments. Art supplies were provided so that Consultants would have a range of tools to express themselves creatively while coming up with messaging. Through their efforts, it was decided that in order to engage LGBTQ youth labelled with intellectual disabilities it was crucial to emphasize:

fun community events
making new friends
taking pride in one’s self and community
speaking up for one’s self and community
receiving support

Consultants spoke with self-advocates to help frame the content of the resources. The Consultants discovered a desire among the youth to be personally featured in promotional materials as real-life examples of LGBTQ youth living with intellectual disabilities, thereby serving as role models to their peers.

To make this possible, program staff coordinated a photo shoot with the youth who wanted to be featured in resources. Accompanying text was collaboratively written; this text would appear on promotional postcards and other literature bearing the images of these self-advocates. Final copy of this text was presented by Consultants to the drop-in group members for additional feedback. reachOUT staff also engaged experts in critical disability studies, disability activists and other service providers to have materials vetted for accuracy and representation. For examples of some of these materials, see Program Materials.

Given the positive reception of these materials by both peers and service providers, interest in producing additional resources was expressed.

The production of each resource involves a similar consultation process. reachOUT staff first meet with Consultants to establish an approach, thematic focus and accessible written content. The proposed approach, themes and content are then presented to participants in the drop-in group setting for additional feedback. reachOUT staff then seek additional input from key stakeholders, including people who do critical disability work, activists and sexual health educators in the developmental services sector.

Materials created for reachOUT’s SHIP project to date have included:

Promotional postcards

Describing the work of reachOUT and its support and advocacy programs, these postcards are designed to solicit the participation of LGBTQ youth and adults living with intellectual disabilities and their allies.

Public presentation and performance templates

Designed to be used in workshops that are co-presented with service providers and LGBTQ youth labelled with intellectual disabilities, these templates serve to help highlight the primary concerns of participants, which are identified through consultations and focus groups. Templates inform a variety of presentations and performances; some include more detailed explorations of personal experiences lived by LGBTQ youth labelled with intellectual disabilities, which are presented through performance. In specific cases, theatre scripts are developed to provide another resource to draw on.

To date, presentations and performances have included the following themes:

Creating accessible services for LGBTQ youth labelled with intellectual disabilities
Dr. Knows It All: Social model of disability vs. medical model of disability, diagnosis and labelling
Responses to homophobia and transphobia
Anti-bullying
Barriers to employment
Disability rights and self-advocacy

Documentary film: Our Compass

Born out of the enthusiastic response to print materials featuring youth standing up as real-life role models for their LGBTQ peers labelled with intellectual disabilities, this short documentary film further showcases the personal testimony of youth involved in reachOUT while serving as an awareness-raising tool (when presented at film festivals, conferences and other events) as well as an educational resource available to educators and social workers.

Articles for Print Publication

Designed to raise awareness about LGBTQ youth labelled with intellectual disabilities, the reachOUT team developed articles for the Journal on Developmental Disabilities. In addition, the project was highlighted in Empower: Youth, Arts, and HIV, Our Schools / Our Selves (Sex Ed and Youth: Colonization, Sexuality and Communities of Colour) and in an article in the Toronto Star (see Program Materials).

As other agencies have become more aware of reachOUT, the team has been invited to present in cities across Ontario. The reachOUT staff is responsible for liaising with service providers and clarifying the audience and focus for these trainings. Participants in the program are always engaged as self-advocates to participate in the creation of materials (to whatever extent they are comfortable) in order to ensure the content best reflects their concerns. Whenever possible, reachOUT staff ensures that Consultants are available to present or co-present at these events.

Required Resources

Human resources

SHIP relies on the work of reachOUT’s staff and Consultants to engage participants who are LGBTQ youth labelled with intellectual disabilities in the creation of resources. Staff, Consultants and the other participants are critical to the resource development process.

To engage in this collaborative resource development in an environment where services are not already accessible to people labelled with intellectual disabilities, it is important to plan for extended time for consultation with youth as well as flexibility in the planning process.

Further, the reachOUT staff has found that when they put too much emphasis on solely accomplishing tasks, Consultants have expressed their disinterest by attending fewer meetings. Where possible, reachOUT staff balances the sometimes-boring (but necessary) activities with work that is more engaging to youth.

In addition to this challenge, many of the people involved with reachOUT have experienced and continue to experience multiple and complex forms of oppression. Many have also been labelled with mental health diagnoses and it was important for staff to set aside time for ongoing and crisis support. Further, it has been a priority for the reachOUT team to engage and advocate with agencies across Toronto to establish stronger referral networks.

Keeping the social determinants of health in mind during the course of the work is important for staff in addressing not only individual but structural barriers to participation, including poverty, housing, employment and mental health. (Click here for a discussion of the social determinants of health.)

Bearing these considerations in mind, reachOUT looked for people with the following qualities and experience when selecting both staff and Consultants:

Experience working collaboratively with people labelled with intellectual disabilities and/or members of other marginalized communities
Commitment to community engagement of LGBTQ people and their allies
Demonstrated group facilitation skills, presentation experience and workshop evaluation qualifications
Skills and/or interest in the arts (including music, visual art, film and/or theatre)
Knowledge of and personal connections with LGBTQ communities
Commitment to creating accessible formats for people labelled with intellectual disabilities
Knowledge of both local and provincial services for people labelled with intellectual disabilities
Strong commitment to anti-racist and anti-oppression frameworks
A trans-positive, queer-positive and sex-positive approach
Understanding of critical disability perspectives
Previous work experience in the developmental services sector

Staff

Project Coordinator (full-time)
Responsible for coordinating all aspects of the project, including liaising with funders, work plans and timelines, training, budget management, team supervision, mentoring, outreach, group co-facilitation, conference and workshop presentations, curriculum development, fundraising and communication strategies.

Project Assistant (3 days/week)
Initiates community contacts and responds to project inquiries, liaises with community partners, co-facilitates training workshops, assists with all project logistics and fundraising efforts and participates in community networks.

Social Work Placement Student (2-3 days/week)
Co-facilitates meetings with Consultants, assists with the development of training and outreach materials, provides support and resources to team.

Evaluation Coordinator (as needed)
Designs and conducts project evaluation in collaboration with the team.

Graphic Designer (as needed)
Designs all promotional materials for the project, with input from the team.

Consultants

Team of four Consultants who are LGBTQ people labelled with intellectual disabilities. The Consultants help to provide direction for the project, co-facilitate trainings, conduct outreach and promote and host community events.

In selecting Consultants, reachOUT looked for people who:

Had lived experience as LGBTQ people
Had been labelled with an intellectual disability
Came from a range of ages, including both youth and adults
Represented diverse ethno-cultural communities
Were interested in learning more about disability rights and self-advocacy

Because trans people and women are often under-represented in self-advocacy work, the team also prioritized the participation of youth from these communities.

Material resources

Art supplies
Food for events
Travel budget for public transit tickets, gas and/or mileage

Financial resources

In addition to the staff salaries and honoraria for Consultants are the fairly nominal costs of art supplies and food for events. It is important to plan for travel costs, as these were more expensive than originally anticipated. Any printed supplies (postcards, brochures), events (workshops, dramatic presentations) or videos incur additional expenses such as pre-production, production and post production costs as well as distribution costs.

Challenges

Developing accessible approaches to community development and sexual health promotion
- Like many people, youth labelled with intellectual disabilities can find too much task-based work uninteresting. While all project work includes tasks and details, the team needs to decide which elements of a project are better suited to collaboration and which pieces should be accomplished by staff alone. Consulting and collaborating with the youth in ways that place their experience at the centre and acknowledge differences is key.
- Working across disabilities—meaning with individuals labelled with a variety of disabilities—requires that all activities are accessible for a diversity of people who may have a range of cognitive skills and abilities. It is important to take this into account when planning roles for volunteers, peer educators and Consultants. By having clear ideas about what needs to be accomplished, staff can tailor the roles of each team member to suit the skills and abilities of that person. In this way, everyone does not have to do the same work, but each person does work that is a good fit for them and that contributes to the project.
- Designing workshop activities that take into account a range of abilities is critical. reachOUT has found that arts-based activities such as visual arts and theatre can be one way of creating more inclusive workshop environments that accommodate differences in verbal and nonverbal communication and understanding.
- A barrier to participating in activities can relate to participants’ financial constraints. reachOUT observed a drop in participation when they were not able to subsidize participants’ travel costs.
Truly collaborating with people labeled with intellectual disabilities takes more time than traditional ways of working. Collaboration requires team members to build in additional time for preparation, consultation, review of materials and the development of more accessible approaches and documentation. If team members do not shift their timelines, this can lead to frustration and shortcuts, with a real impact on the participation levels of people labeled with intellectual disabilities.
Ensuring that appropriate supports are in place for participants, who often experience multiple and intersecting oppressions, can be a challenge. Many participants have experienced extreme forms of oppression. It is important to recognize how this may impact group dynamics and participation and to ensure that staff is able to provide support and additional referrals when needed.

Evaluation

The drop-in groups at reachOUT, including Compass, were evaluated in April 2008 through a combination of quantitative and qualitative methods. Using a survey and one-on-one interviews, the evaluation collected data from 35 current and former participants in the program. Some of the key findings of this evaluation confirmed the relevance of the key objectives of the reachOUT program as well as the need for the safe space of the drop-in groups. The findings also recognized the continued need for community building and contributed to the growth and development of Compass, with its focus on putting LGBTQ youth labelled with intellectual disabilities in touch with each other across Ontario. In its recommendation for an increased diversification of activities for youth served by the program, the evaluation contributed to the formation of SHIP, with its focus on the involvement of Consultants and participants in the creation of awareness-raising resources. To review the evaluation report, see “Program Materials.”

To gain a deeper understanding of the sexual health needs of LGBTQ people labelled with intellectual disabilities, reachOUT has partnered with the HIV and Youth with Disabilities research project including Sarah Flicker, Ciann Wilson and Alex McClelland from York University; Stephanie Nixon from University of Toronto; Denise Nepveux from Syracuse University; Devon Proudfoot from Duke University; and Zack Marshall from Memorial University of Newfoundland. This team has presented results at the Canadian Association for HIV Research, the Ontario HIV Treatment Network, and the Critical Junctures conference at University of Guelph and recently submitted three articles for publication on this work.

Lessons Learned

Involving LGBTQ youth labelled with intellectual disabilities in key decisions increases the personal agency of self-advocates.
The active participation of Consultants in shaping the direction of each resource and engaging participants in providing their feedback is critical to the relevance of the resources.
Consulting with community stakeholders with expertise in disability and sexuality helps in the development of accurate and relevant resources.
The approach to working should be flexible, fun and social in order to maximize the engagement of people labelled with intellectual disabilities.
Success requires a “safe” environment in which participants are free to express opinions and feelings without fear of personal judgment or stigma.
The social determinants of health have an enormous impact on the LGBTQ youth labelled with intellectual disabilities who collaborate on this project and this must be accounted for at every step.
Within the developmental sector, service providers often work with a broad range of people labelled with intellectual disabilities. This can include differences in verbal and nonverbal communication and understanding. Designing workshop activities that take into account this range of abilities is critical. We have found that arts-based activities such as visual arts and theatre can be one way of creating more inclusive workshop environments.

Program Materials

Contact Information

For more information on SHIP, please contact:

Tess Vo
Supervisor, reachOUT and Community Connections
Griffin Centre Mental Health Services
24 Silverview Drive
North York, Ontario M2M 2B3

416-222-1320 x171

tvo@griffin-centre.org