Research into adults with learning disabilities published in 2005, highlighted that in the UK only 3% of people with a learning disability live as part of a couple, compared to 70% of the general population.
Dr Claire Bates, Honorary Research Associate at the University of Kent’s Tizard Centre and Quality Analyst at Choice Support, set out to explore the subject for her PhD thesis. She researched how people with learning disabilities find romantic love and form partnerships, what brings them together, and what helps them to maintain relationships.
As part of her research, Claire found that good staff support for people’s relationships made a huge difference to the relationship’s potential success. Her findings also included that people with learning disabilities experience barriers to relationships, that their rights and choices are not always respected and that there’s a climate of risk aversion in areas such as sexual relationships. The research also highlighted the balancing act staff must engage in to ensure that they remain supportive without being controlling or overprotective of individuals in relationships.
From these findings, Claire set up Supported Loving; a social media campaign to raise awareness of the importance of loving relationships for people with learning disabilities, focusing particularly on the difference that good staff support can make.
The six-month campaign started in February 2017 in order to:
- Share information far and wide, amongst professionals, people with learning disabilities, their families and staff.
- Highlight the importance of good support in helping people with learning disabilities develop and maintain loving relationships.
- Identify what constitutes good and poor support in relationships.
- Video and text blogs on the topic of good support in relationships.
- Sharing stories in words, pictures and films, of good and bad support on Twitter and Facebook.
- A national network group which meets quarterly.
Claire explained her reasons behind the campaign, ‘I used to work as a support worker myself and when I was doing my PhD research I was reminded that support staff have a difficult job. When they are supporting people to find and maintain relationships they end up taking on many different roles – protector, friend, relationship counsellor, mediator, sexual health adviser…the list goes on.
‘I saw the difficult challenges that staff faced when working with women with learning disabilities who had suffered sexual abuse yet wanted to find a new partner. Staff were providing both emotional support and practical advice on keeping safe. Staff were also the point of contact when something went wrong in a couple’s relationship. For example, one married couple I was speaking to for my PhD separated during the course of my research, and I saw how staff had to support both parties and mediate a separation and possible divorce.’
The campaign was so successful that it has continued beyond the original six months. On Twitter, it has over 1,250 followers and a reach of more than 32,000. It also has a regular podcast of interviews and questions from Twitter.
Supported Loving has also attracted additional money from generous network members at Hft to sponsor more network meetings. Claire continued, ‘We hold network meetings every three months for around 50 people at a time. They book up very quickly. We now have a strong network of people across the country who are able to offer expert advice to members on issues such as supporting positive relationships, including sexual ones, advice on safeguarding and risk management regarding relationships, sexuality, the law surrounding sex and practical training for staff and people with learning disabilities.’
As a result of the work and campaign, two staff within Choice Support were inspired to set up two lesbian, gay, bisexual and trans social groups in the north and south of the country.
Claire has also, along with some people with learning disabilities, participated in a focus group for an online dating site designed for people with Asperger’s, autism and learning disabilities.
On a financial level, Claire’s research showed that when people are in a loving, supportive relationship they can require less paid support. She explained, ‘I know of couples who no longer need paid support to travel independently as their partner can do this with them.’
Role of support workers
For Supported Loving to continue on its path of raising awareness and supporting people to have loving relationships, it needs providers to engage and support workers to have the right attitude, training and support themselves. It also needs to be incorporated into support planning.
Claire continued, ‘The role of support staff is complex as often they are not just supporting the couple or individual but other people who live in a shared home.
‘During my research interviews numerous participants discussed their housemates’ jealousy about relationships, and how staff had to mediate the ensuing conflict. And what is already a demanding task is made harder, as we know that in times of austerity, relationship and sexuality training is a luxury that many support providers cannot afford. To make love a reality for everyone, there needs to be good quality training for staff, we need a workforce that is prepared and has the right attitude and organisations who are willing to facilitate this.
‘Organisations need to start seeing the real social value in relationships and what they can offer to people rather than the risks.’