Valakupiai Rehabilitation Centre (VRC): NITIATIVE OF HUMAN SEXUALITY NORMALIZATION IN LITHUANIA

Sexuality is an important part of all of people lives. We all have a body, genitals, we all face stereotypes. At the same time, in Lithuania, sexuality and sexual health are an uncomfortable topicfor many people, including professionals in education, social or health care sectors.World Health Organization's experts say that sexual health is very important for the general well-being of the individual.

Good sexual health depends on:

1. opportunities to get detailed, science-based information about sexuality, sex relationships, potential risks,

2. availability of sexual health care,

3. a society that normalises sexuality education as important in part of life, encourages respectful debate on the topic, provides information availability.As well as United Nations Convention on the Rights of Persons with Disabilities states the importance of access to education, information and communication in enabling people with disabilities to fully enjoy all human rights and fundamental freedoms.In the end if 2022 and 2023 our team has implemented national initiative on sexual education for people with intellectual disabilities. The initiative aims at giving knowledge, skills and confidence for adults with intellectual disabilities and professionals in the field about science-based sexuality education including the equality of partners, human autonomy in making healthier and safer decisions.The initiative was implemented by Valakupiai Reahabilitation Centre’s (VRC) team in cooperation with the Departament for the Affairs of the Disabled under the Ministry of Social Security and Labour (the Department) and invited experts.The initiative comprise of 4 steps:1) in 2022 organised discussion "Sexuality is not a shame. Disability is no exception" - a face-to-face discussion for partner organizations, (50 participants);2) in 2022-2023 publication "What we should know about sexuality" in easy-to-read language - the 1st publication of such kind for people with disabilities, 3) in 2023 May-June we made 2 trainings for support specialists for people with disabilities on the topic of sexuality education, where 60 professionals gained knowledge.34) in 2023 September we organised an online discussion dedicated to celebrate the World Sexual Health Day -"How should social workers and relatives deal with the sexuality of people with disabilities?"Responsible Department or UnitThe Development unit and it’s head - Rasa Noreikytė Ustinavičienė - was responsible for coordinating the sexual education initiative. Rasa coordinated implementation and communication of publication and events.Goda Gudienė - a social worker of VRC - is the initiator of finding the ways to ensure the rights of people with disabilities in the field of sexual education. She is the author of the publication "What we should know about sexuality" in easy-to-read language, lecturer of the training and speaker in the events.Dovilė Sabaliauskaitė, the social worker VRC. She was a lecturer of the 2 trainings for support specialists for people with disabilities on the topic of sexuality education together with G.Gudienė andresponsible for communication.Natalja Markovskaja - Head of the Vocational Rehabilitation Unitin VRC moderated the discussion "How should social workers and relatives deal with the sexuality of people with disabilities?"Target group/sThe initiative has focus of these groups1. Social workers and other support specialists, working with people with intellectual disability,2. Family members of people with intellectual disability,3. People with intellectual disability. 4. General society.Methodologies and approaches used to develop and carry out the initiative; service/s or activities that were developedValakupiai rehabilitation centre initiatives did include two discussions, training programme for specialists on sexuality education and the publication in easy-to-read language:1) in 2022 June we organised discussion "Sexuality is not a shame. Disability is no exception" with a famous sexual education specialist from the Vilnius university - Akvilė Giniotaitė and Dainius Pūras - child psychiatrist, who was the only one from the professional community to have agreed to participate in such a discussion. There were also partner organisations, we had round table discussions;2) in 2023 May Valakupiai rehabilitation centre together with the Affairs of the Disabled under the Ministry of Social 4Security and Labour launched the publication "What we should know about sexuality" in easy-to-read language. The purpose of the publication is to introduce sciencebased sexuality education with the aim of ensuring equal opportunities for all to making healthier and safer decisions. The publication presents 42 sexuality education topics, like feelings, identity, genitals, sexual relations, sexually transmitted infections, safe sex, contraception, violence, etc. The publication is prepared on the basis of the Swedish Association for Sexuality Education’s materials. 3) in 2023 May-June we made 2 online trainings for support specialists for people with disabilities on the topic of sexuality education;4) in 2023 September Valakupiai rehabilitation centre organised a discussion "How should social workers and relatives deal with the sexuality of people with disabilities?". The discussion was dedicated to celebrate the World Sexual Health Day. Discussion was held online and 205 support specialists joined.Elements of innovation and creativityPublication about sexuality education for people with intellectualdisabilities in Lithuania created in Lithuania. This publication is accessible for everyone to read or for specialists to use as education tool.Publication is prepared in easy-to read language ( Lithuanian language). That every person could read independently from their care givers or family members and gain knowledge.How did the initiative demonstrate that it follows a rights-based approach?Our initiative addresses the United Nations Convention on the Rights of Persons with Disabilities, which states the importance of access to education, information and communication in enabling people with disabilities to fully enjoy all human rights and fundamental freedoms by:● educating the support specialists and family members of people with disabilities on the importance of sexual education for people with disabilities to enable support net to help those of need,● publishing an online version of the easy-to-read publication: "What we should know about sexuality".Staff and resources (skills qualifications, infrastructure, materials) mobilisedStaff of Valakupiai Rehabilitation Centre, The Department of The Affairs of Disabilities under the Ministry of Social security and labour.Were specific needs of the target group/s identified or people with a disability consulted in the realization of the initiative? If yes, how? (co-production approach)Cooperation with people with intellectual disabilities were implemented:1. by selecting the topics for the publication, they were asked what of the topics should be described in the publication2. the group of people had reviewed the publication wording and illustrations, their remarks were taken into account. 5The reviewers with intellectual disabilities are listed as coworkers in the publication together with the authors.3. The events held for specialists always involved the stories of people with intellectual disabilities. As talking about their body or sexsuality needs, its not always and easy and comfortable, the organisers have shooted brief videos were people talk about what is important to them, if it is comfortable to talk about sexuality topics and other important issues. These videos were used to encourage the discussions during the events.Were other stakeholders or partners (employers, families, associations, informal network, etc.) involved? If yes, how?Organisations providing social services for people with disabilities and their family members involved, the main state institution, representing the rights of the people with disabilities involved as a partner - the Department of the Affairs of the Disabled under the Ministry of Social Security and Labour.MONITORING AND EVALUATIONWhat have been the main impacts on your users/clients, staff and the organisation?The main impact of the initiative has been normalisation of the disability and sexuality topic combination on the national level.Care specialists has more confidence, knowledge and tools to educate their service users or their family members,This enables more smooth communication between support specialists, their family members and the clients. By normalising the sexuality education topic for people with disabilities, we are now able to provide services to the clients more efficiently and discuss matters using official, science-based vocabulary, like masturbation, sexual expression and sexual needs, etc.How are you measuring/assessing whether the service/initiative is implementing some or all the key factors characterising the rights-based framework? Do you have any evidence or studies to show the impact?As for now our main aim was to normalise the topic of sexuality and people with disabilities, we think, we are gradually achieving the aim:● 50 specialists from invited partner organisations only have participated in the discussion "Sexuality is not a shame. Disability is no exception" (mainly social workers participated. A written feedback we received was very good, thanking for the initiative and asking for more such events with specific questions from their every-day challenging situations),● in 2023, May-June held trainings for support specialists for people with disabilities on the topic of sexuality educationinvolved around 70 people, mainly individual care specialists, whose written feedback we have also received and it was maily very possitive.● in 2023 September Valakupiai rehabilitation centre organised a discussion "How should social workers and relatives deal with the sexuality of people with disabilities?", where 205 people joined online, mainly support specialists and family members of people with disabilities. There were some very specific questions raised during the discussion and we also have positive Facebook comments afterwards,● there is a video, with people with intellectual disabilities, who have tested the publication "What we should know about sexuality" in easy-to-read language and they discuss the 6need of sexuality education for them and why it is important to them. What are, in your experience, the “success factors” or support measures which allowed your organisation to realize users’ inclusion, independence, participation and access to services?One of the main success factors of our initiative to start speaking more about sexual education for people with disabilities was Valakupiai rehabilitation centre collaboration with the main state institution, responsible for rights-based living of disabled people in Lithuania - the Affairs of the Disabled of Social Security and Labour. Mainly their dissemination of information on sexual education in their web page.There is a video, with people with intellectual disabilities, who have tested the publication "What we should know about sexuality" in easy-to-read language, showing the inclusion and participation and active involvement in using the end product from the people with disabilities perspective. What were, in your experience, the biggest hurdles or problems which made implementing rights-based approach to service creation, production and delivery difficult to be developed or put in place?● Sexuality is an important part of all of our lives. We all have a body, genitals, we face gender stereotypes. At the same time, in Lithuania, sexuality, sexual health are still uncomfortable topics for many. Not to mention people with disabilities. ● When Valakupiai rehabilitation centre organised events to support the rights-based non-discrimination and participation principles of people with disabilities in sexual education field, it was very difficult to persuade to participate psychiatrists and psychologists specialising in working people with disabilities. They almost all unanimously rejected invitations, officially due to not specialising in sexuality field, but probably, they may have been afraid that the society was not yet ready to discuss this sensitive combination - disability and sexuality. We wanted professionals to help us identify the differences in sexual expression due to anxiety or sexual need itself, because the ways to deal with sexual expression can be different. For ex., if a person with disabilities touches his genitals due to increased anxiety, we have to deal with anxiety, but not sexuality, however this seems so related. ● We found a fruitful collaboration with the academic community instead (Akvilė Giniotaitė), who came with many answers about general statistics in sexual education (for ex., how many neurotypical kids / adults are masturbating) and Goda Gudienė from Valakupiai rehabilitation centre had some online training herself to specialise more in the disability field (for ex., 90 percent of non-speaking autistic people are masturbating). Therefore we had strong and science-based events.FUTURE DEVELOPMENTS AND TRANSFERABILITYHow do you see the initiative developing in the future?1. Now we have the publication "What we should know about sexuality" in easy-to-read language. but what we could really benefit more of - to translate a methodology (maybe a shorter version) as in Sweden for support specialists to introduce 7sexual education for people with disabilities: https://www.rfsu.se/globalassets/pdf/lattare-svenskametodbok-2019.pdf and2. start a simple but very needed training for people with disabilities on sexual education in Lithuania, like BBC shared in their article: “Disability and dating”: https://www.youtube.com/watch?v=PkmJM0irmhsWhat are the major future challenges you see in relation to the initiative, for your users/clients, staff and organisation and for employers? How does your organisation try to overcome them?The main challenge that the process of ensuring sexual education for people with disabilities in Lithuania could be very slow. It takes time for gaining the approach and knowledge for staff, finding the best practical solutions for ensuring the sexual rights within the organisations or families.To ensure the rights-based non-discrimination and participation principles of people with disabilities, Valakupiai Rehabilitation Centre intends to continue organise training, open discussion and prepare other tools for sexual education topic. Do you think the initiative could work in another country? If so, which aspect/s and why?1. First, this initiative could fit into any other post-soviet country, because the issues could be similar - people’s with disabilities rights not represented in the sexual education field due to the fact that societies still feel uncomfortable talking about sex. 2. Second, all initiatives, like discussions, were made with mainly no additional monetary resources, except for the publication "What we should know about sexuality" in easyto-read language, which was financed by the Affairs of the Disabled under the Ministry of Social Security and Labour. Sometimes you just have to identify persons in your organisation or partners network, who are eager to know more & make changes in society, for ex., in sexual education for people with disabilities. And the best you can do - is to enable this employee make those changes.POLICYHow would you describe your organisation’s cooperation and dialogue with policy makers and/or public authorities as to adaptations you had to make?VRC has been asked to write a publication using easy-to-read language by the Department published the publication: publication"What we should know about sexuality". The Affairs of the Disabled of Social Security and Labour has observed Valakupiai rehabilitation centre proactively working on the sexual education topic and probably saw us as a strong partner to write the publication. When the Affairs of the Disabled of Social Security and Labour disseminate information on sexual education in their web page, all our target groups: 1) support specialists, 2) family members and 3) people with disabilities themselves get unified information form the major source.We started a new cooperation: Valakupiai rehabilitation centre has received a call the from Office of the equal opportunities ombudsperson, stating that they very much liked the publication "What we should know about sexuality" in easy-to-read language and asked if they could quote our publication in their future publications on disability and sexual/physical violence.8Have there been changes in legislation or regulations that positively or negatively affected the realization of rights-based services? If so, could you briefly describe what changed and with what effect for your users/clients, staff, organisation and employers.No new changes in legislation happened yet, but there have been wider discussions on the obligation for day care centres and other social service institutions to ensure a private and safe place for people with disabilities, for ex., in case of masturbation. What would need to change in funding, policy and regulatory frameworks to better support people with disabilities’ rights?Some regulatory frameworks would help, which would state:1. who (social workers or NGOs or schools?) is responsible to help people with disability to provide knowledge about their bodies and sexuality,2. unified sexual education materials made available for people with disabilities, like publication "What we should know about sexuality" in easy-to-read language.And just general continuous discussions about sexual education for people with disabilities would help to normalise this topic and let us