SHADA has produce this policy in order to encourage governing bodies to adopt them, and we campaign for this to happen.
Creating your Policy, Guidelines and Training for working with all types of disabled people
The Recognition Model v PLISSIT
Reasons why this work is important
Relevant Organisations and Documents
This template has been created by an advisory panel including a team of SHADA pioneering lawyers, health care professionals, parents and exoerienced disabled people, who all support disabled people with their sexual lives.
By disabled people we include those people with physical, sensory, learning and social disabilities. Social disabilities includes people who are autistic and those with mental health problems.
It is illegal not to support disabled people to enjoy the same pleasures as others enjoy in the privacy of the their own homes (Equality Act 2010, Human Rights Act 1998).
In order for you and your members / students to keep within the law, we have created a template for you to use as a basis for discussions about how you would like to proceed. Most governing bodies have shown no interest in this subject, as exemplified by our FOIs (see below) but this is neither acceptable nor legal.
THE RECOGNITION MODEL V PLISSIT
A special model was created long ago for discussing sex with clients. It is called the PLISSIT model.
PLISSIT stands for:
Permission giving (letting your client know it’s OK to discuss sex and/or the topic they are concerned about)
Limited Information (like saying that most people have sexual desires, many people masturbate, and would like to fall in love and enjoy a sexual relationship)
Specific Suggestions, and
Intensive Therapy recommended
However, Lorna Couldrick, an occupational therapist based at Brighton University has critiqued the PLISSIT model as unsuitable for disabled people because:
1) Disabled service users may approach health and social care professionals, sometimes in places and situations where discussions on sex would be difficult, and yet they must find a way to allow the discussion to take place. These disabled people don’t need permission giving but others do.
2) It assumes the worker recognises and accepts that the disabled person is a sexual being with sexual needs.
3) The PLISSIT model lacks exploration, often required to dig around to find exactly what the disabled person needs. Issues for disabled people may range from establishing and maintaining a relationship, adapting to changes in roles with lover/carer, and not just problems within the human sexual response cycle. Without exploration, professionals will not be able to identify appropriate support and help.
4) Taking a team approach, responsibilities can be shared so that each member can bring their own expertise and those who find certain things difficult are compensated for by their colleagues.
5) Finally, very few disabled people who are seeking support require intensive therapy.
Instead, Lorna proposes the Recognition Model for use with disabled people :-
The Recognition Model lists five stages of interaction:
1) Recognition of the service user as a sexual being
2) Provision of sensitive, permission giving strategies
3) Exploration of the sexual problem/concern
4) Address issues which fit within the team’s expertise and boundaries
5) Referral on, when necessary.
You can see this in full on http://shada.org.uk/wp2/?page_id=44
REASONS WHY THIS WORK IS IMPORTANT
Disabled people’s sexual rights are too often being ignored. We hear sad stories from them, their parents and friends. For example, a mother with a disabled daughter who had a short life expectancy was struggling with watching her daughter’s sexually experimental lifestyle, taking enormous risks. Once a year, they went together to her consultant but he never asked about how this side of her life was progressing, and so they received no support or help.
A man with cerebral palsy told the Sex and Disability Helpline that ‘One of my healthcare professionals told me I was one of the unfortunates who would never experience sex because of my disability, and to forget my feelings. I’m feeling, I am the only one. Is there anyone who can advise me’.
Another man told us that when he had a relapse of his psychosis, he had an uncomfortably high sex drive, requested medication from his doctor. But now that sex drive is minimal, his pleasure is markedly reduced and the desire for a partner is still there and unfulfilled, making him very unhappy. The professions who are involved in his care never asked about how he is getting on.
All of these are unacceptable and totally unnecessary. These people could easily have been helped, rather than having their needs ignored.
It is highly likely that one day, someone having an experience like this will press charges of discrimination.
Disabled people are not asexual because they are disabled. They may want one or more of the wide range of sexual experiences that the rest of society enjoy, and that includes all kinds of sex including self pleasuring and kinky sex, heterosexuality, homosexuality, bisexuality, as well as asexulality, which a valid label used by 1%vof the population.
Each disabled client must be asked if they would like to discuss their sexual and relationship aspirations / problems / frustrations with a member of staff, in confidence. The member of staff needs to accept what they say, it may be that any of the things included in the paragraph above, or maybe that they don’t need to discuss their personal life, as everything is OK.
They could be asked which member of staff they would feel most comfortable with talking about these very personal (and normally private) matters.
Those disabled clients who normally only ever see one professional in their daily lives, must definitely be asked by them, be it a consultant, a GP, a nurse or a counsellor/therapist. This is their only chance to have these discussions with someone who understands their condition and can advise them.
The question of sex and relationship worries / problems or troubles will be on the list of every history-taking, assessment or check-up. The question must always be asked.
Clients might want, for example, to be able to
~ view porn
~ try online dating or a club
~ use sex toys and perhaps have support to use them
~ share a bed with a lover in a private room
~ use a webcam service or
~ hire a sexual service, either at home, in the residential college or residence, in a hotel or in the service provider’s place of work. All these legal options should be allowed
Clients will be given control over their own bodies, and be protected from sterilization solely because of their disability.
Clients’ sexual orientation and preferred lifestyle (e.g. enjoying kinky or fetishistic sex, polyamory, etc.) and choice of birth control will be respected. Women who find penetration difficult because of spasms, will be supported. Relaxation can be brought about by massage, orgasm, or botox injection. Clients will be made aware of the Sex and Disability Helpline.
Clients will be provided with protection from sexual harassment and from physical, sexual, and emotional abuse.
If a couple need an enabler to support them to have better sex with each other, and teach them how to have a happy sex life together, then they will be supported to do so and enablers can be found on the TLC website www.TLC-Trust.org.uk.
Clients will receive sex education specific to their conditions, encouraging informed decision-making, reproduction, marriage and family life, abstinence, safe sexual practices, sexual orientation, sexual abuse, and sexually transmitted infections.
The interview process of potential new employees/students must include at least one question on attitudes and abilities to discuss sexuality, to try and ensure that people are coming to the workplace with the right attitude or at least with a willingness to learn.
This policy should be discussed and updated annually, and put into practice, with reports on action discussed in each staff meeting.
Staff will be mixed on their enthusiasm for this policy. Some may be unwilling on religious grounds, others may feel ill-qualified or shy, some might feel they don’t have enough time, whereas others might be enthusiastic and keen to have approval do this work.
What must be made clear to them is the disabled clients will be happier, safer and may be far less trouble to the staff, as sexual frustration often leads to challenging behaviour.
Regarding members of staff who don’t agree with the idea, or feel unable to do this work: some places have suggested they change jobs, others accept they need not be involved.
If your clients have moderate or severe learning impairments they may be non verbal so your staff could follow the example of Chailey Heritage Foundation produce a ‘Book of Words’ (or similar) using pictures of sexual parts and activities, so that sex can be discussed with them. Makaton also produce sexual signs for this purpose. If you are working with anyone with learning impairments they may prefer information about sex and sexual activity in a visual way. See www.fpa.org.uk or www.bodysense.org.uk for resources and training with ideas of how to do this.
Time needs to be allocated in the courses of those training to become a health or social care professional, to give them a basic understanding of sex, relationships and disability. This includes the following :-
1) Information on the law surrounding this subject
a) It is illegal not to support disabled people to enjoy the same pleasures as others enjoy in the privacy of the their own homes (Equality Act 2010, Human Rights Act 1998). ‘.
b) If your client lacks mental capacity, you and members of your practice can decide what is in their best interest and document how this decision was reached and, once this is done, legally proceed to support him or her in their sexual lives.
c) signs of happiness/pleasure can indicate consent
d) It is perfectly legal to contact a sex worker on behalf of a disabled person.
e) The law around a residential home actually paying for this service is complicated, seek legal guidance.
f) It is perfectly legal for for a disabled resident to invite a sex worker into their room in their residential establishment or hospice, or to be escorted to their place of work.
2) How to gain the confidence to do this work
Some health and social care professionals say they are too shy, feeling ill-equipped, or nervous about talking about sex at work to their disabled clients. The Sexual Respect Tool Kit provides support for those nervous about supporting their disabled patients and clients with any relationship and sexual difficulties. www.sexualRespect.com.
You might find it helpful to read the book ‘Supporting Disabled People with their Sexual Lives’ published by Jessica Kingsley. This describes how staff can gain confidence talking about sex to their disabled clients and how they have then realised how important it is.
If there is a member of staff who naturally finds this easy (perhaps because sex was talked about at home when they were growing up), they might start the ball rolling by speaking to the others. They could also be responsible of ensuring your policy is put into practice and all clients are listened to, whatever their condition or desires.
This member of staff can be a back-up in case the original one feels out of their depth but, the outcome needs to be discussed with the team, with the permission of the disabled individual, or not using their name.
Sue Lennon, cancer nurse, in the Sexual Respect Tool Kit film, is great to watch, as she says the following in such a relaxed and inviting way, “Many patients in your situation have reported a sexual impact from their illness.’… Is that something you’ve experienced?… are you able to talk about it?…Would you like to talk about it now?”
Health or social care professionals need to :-
a) ask the client what they want and
b) support them to find ways of getting there. Simple things like masturbation advice, sex toys, sharing a bed, dating, going to a gay or fetish club, and hiring a sex worker.
It’s not rocket science, but fun! They can always phone the Sex and Disability Helpline for advice http://www.outsiders.org.uk/outsidersclub/contact/
The Health and Social Care Act 2015 states there is a duty to share information about a client, either with their consent if they have capacity or in their best interest if they lack capacity in relation to the information. That might facilitate teamwork.
Obviously, disabled people can and do enjoy sex and many find their own ways to do so if, for example, if they can no longer get an erection, feel their genitals or touch themselves. They may choose, for example, to forget the way they imagine other people have sex (shagging) and enjoy goal free sex, This is taught by Tantric practitioners and you can find a list of such people who work with disabled people on www.TLC-Trust.org.uk.
If they want to learn what their bodies are capable of and how to please a partner, they can hire somebody to teach them from the same website, TLC.
If they need an enabler to support them to have better sex with a lover and teach them how to have a happy sex life together, practitioners on TLC may perform this task.
3) Safeguarding and Freedoms
One of the law experts on this Advisory panel, human rights and criminal lawyer, Professor Claire de Than, believes in ‘Rights not Risks’, as professions have moved too far toward risk assessments and away from encouraging pleasure.
She says, ‘Everybody has the right to sexual expression, relationships and fun, and these rights should be supported and enabled whenever no harm will be caused by doing so’.
She says ‘The Health and Social Care Act 2015 states there is a duty to share information about a client, either with their consent if they have capacity or in their best interest if they lack capacity in relation to the information. That might facilitate teamwork.
Here is a quote from a court case about a vulnerable young woman who had mental health issues and a learning disability :-
“The fact is that all life involves risk.…we must avoid the temptation always to put the physical health and safety of the elderly and the vulnerable before everything else…. Physical health and safety can sometimes be bought at too high a price in happiness and emotional welfare. What good is it making someone safer if it merely makes them miserable? None at all!”
The vulnerable lady was found by judges to have capacity to consent to sex. The local authority had wrongly tried to stop her from having a sex life. Sir James Munby, now the President of the Family Court, has repeatedly urged those involved in supporting disabled people to avoid ‘wrapping them up in cotton wool’.
As we have already said, you don’t need to be particularly knowledgeable to support your clients to venture forward and find what they are looking for. You just need the confidence to ask them what they want and discuss a way forward.
Learning disabled people may not know how to masturbate and short film has been created for them to learn. You can find it on www.outsiders.org.uk under Resources for Health Professionals – On PLD.
Blind people might not know about what other bodies are like and could be taught using sex workers or by models who don’t mind being touched on their intimate parts.
The Outsiders Trust is working on a website to educate disabled people in sex and relationships. DisabilitySexEd.com. We expect to launch it in autumn 2017. In the meantime, if you type the name of your clients’ condition and ‘sex’ into your search engine, you will probably find the information you need.
The information which the disabled client confides in you cannot be shared unless they say they don’t mind (which many won’t).
If they do mind, when informing the rest of the staff about your progress in staff meetings, you can refer each client by a code name.
Problems only arise if they say they want to, or have already been involved in illegal acts.
Since many disabled people are sexually abused when young, especially deafblind people, they are more likely than others to offend themselves. If they have a learning disability, you need to contact Respond, a brilliant charity which supports those disabled people who abuse or bully or are abused or bullied. www.respond.org.uk
If they don’t have a learning disability, you need to contact 101, the police non-emergency line, and they will provide details of the local contact or transfer you to the relevant department.
6) Working together
Teams working together need clear guidelines to ensure everyone is working from the same song sheet. They may include such things as
• ensuring clients can have private time for masturbation
• how staff should approach conversations about sex with clients
• when they are unsure about anything, to bring it to the attention of those in charge
• induction training for all staff on policies and guidelines
• refresher courses regularly laid on for existing staff.
• managers in different areas monitor and support staff in following guidelines
• current topics and problems around sexuality are not left out of meetings
• discussions around sexuality become the norm and enjoyable.
If you are working in a residential home group practice, you need to ensure the staff are trained to become relaxed with conversations around sex, to create an open and uninhibited atmosphere. Discuss with other staff issues such as how you will all cope with this work emotionally, perhaps using Schwartz Rounds. A ‘round’ of issues which practice staff have met whilst supporting their service users will allow sharing of embarrassing or difficult cases. It could also be the time for joint decisions on individuals who need group agreements for their support to move forward. They can identify their mental barriers to including sexuality in holistic care. Brook or the fpa could provide a trainer.
ORGANISATIONS AND DOCUMENTS YOU NEED TO KNOW ABOUT
The Sexual Respect Tool Kit provides support for those nervous about supporting their disabled patients and clients with any relationship and sexual difficulties. www.SexualRespect.com
SHADA – the Sexual Health and Disability Alliance – a group run by the Outsiders Trust of professionals who support each other in their work with disabled clients who want to enjoy sex. www.SHADA.org.uk
SHADA has several policies – both written by the fpa and SHADA personnel on http://shada.org.uk/wp2/?page_id=40.
SHADA International a website run by the Outsiders Trust featuring the pioneers in sex and disability around the world and the groups they run. www.SHADAInternational.com
Family Planning Association, fpa, provides policies, training, advice and resources on sex and relationships for disabled people with parents, carers and professionals. firstname.lastname@example.org
fpa policy on disability http://www.fpa.org.uk/sites/default/files/disability-policy-statement.pdf
Personal Relationships and Sexuality Policy and Good Practice guidelines for staff in Brighton and Hove, working with adults with learning disabilities
A Sexuality Policy That Truly Supports People with Disabilities
by Perry Samowitz at YAI in New York
Personal relationships sexuality and sexual health policy for/area managers and house supervisors/team leaders in Victoria, Australia
Respond supports people with learning disabilities who are abused / bullied or abuse / bully. www.respond.org.uk
Brook Advisory Centres provide confidential pregnancy and sexual advice for under-25s.
Disability, Pregnancy and Parenting International provide advice and information about pregnancy and parenting. http://disabledparent.org.uk/
BILD provides Information and resources about friendships and relationships to support people to have a great life. www.bild.org.uk/information/relationships/
Easy Health Leaflets produced by Mencap and other organisations explaining issues relating to sex and bodies in easy to understand terms.http://www.easyhealth.org.uk
Change Human rights organisation led by people with learning disabilities which has published accessible books about sex and relationships. http://www.changepeople.org
Enhance the UK runs provides disability training in schools and organisations http://enhancetheuk.org/enhance/contact-us/#contact-newsletter
Outsiders Club for physically, sensory and socially disabled people to make friends, enjoy peer support and find partners. Note, other dating sites don’t vet their members so let in predators and unsavoury people. Outsiders also runs the Sex and Disability Helpline www.Outsiders.org.uk
TLC-Trust website run by the Outsiders Trust for disabled men and women to find responsible sexual services www.TLC-Trust.org.uk
How SHADA can persuade the Governing Bodies to use this Template
Lorna Couldric believed that the governing bodies need to decide amongst themselves what their policies, guideless and training should be in order to ‘own’ it and not just put the document in a drawer and forget it. However, since she made this statement almost ten years ago, little has happened and some things have gone backwards, so let’s try this route.
I propose we do the following but wonder what you think?:
1) Replace all the policies currently on the SHADA website with this
2) Put this document on the SHADA International website
3) We draft an email to go to the governing bodies to be sent by Claire de Than
4) Claire to make appointments to meet up with each of them.