DRILL Blog and News

Blog: Supporting people with learning disabilities to have positive sexual relationships

By Anna Marriott, Research and Evaluation programme Lead at NDTi

Supporting people with learning disabilities to have positive sexual relationships

People with learning disabilities want to love and be loved.

This is simply stating the obvious, and we shouldn’t need research to tell us this. However, the National Development Team for Inclusion (NDTi) has been working in partnership with My Life My Choice to explore exactly this topic. We have been researching this because self-advocates at My Life My Choice told us lack of support for sexual relationships for people with learning disabilities is an important issue that needs addressing. This research was funded by the Disability Research on Independent Living and Learning programme, which is funded by the National Lottery Community Fund. This has been a co-produced piece of research, meaning that the original research idea and grant application was planned with people with learning disabilities and self-advocates who worked in partnership with NDTi researchers in terms of designing the study, collecting and analysing the data.

Good quality relationships with partners and friends are important for our health, wellbeing and happiness. They can help protect us physically and emotionally and can bring meaning to our lives. This applies to people with learning disabilities as much as anyone else.

People with learning disabilities have the right to relationships. There isn’t a debate about that. They have the right to respect for private and family life (article 8, Human Rights Act 1998) and participation in the life of the community, as guaranteed by the UN Disability Rights Convention 2006. More recent legislation such as the Care Act 2014 is explicit that local authorities have a duty to promote wellbeing when making decisions about someone or planning services. Personal relationships are one of the nine areas considered as important elements of wellbeing.

So, we don’t need new laws to give people with learning disabilities the right to have a sexual relationship. They already have this right in principle. But there seem to be challenges when it comes to putting rights into practice. When speaking with people for our research, we were repeatedly given examples of ways in which they are treated that ignore their rights. Charlene told us ‘I’ve got a boyfriend, but the staff won’t let me give him a cuddle or a kiss’. Charlene has capacity to take that decision for herself and no-one has the right to tell her otherwise. But they do.

Consent to sexual relationships is an ‘exempted’ decision under the Mental Capacity Act 2005. There are no ‘best interest decisions’ around sexual relationships. So, if someone does not have capacity to consent to a sexual relationship’ then no-one can take this decision on their behalf. This doesn’t seem a radical statement – who would argue that someone should be forced into a sexual relationship/marriage if they don’t have capacity to choose this? However, somehow it appears to be acceptable that someone with capacity, who is choosing to have a sexual relationship, is denied the right.

Why do we have an issue with people with learning disabilities having sexual needs and desires? In the media we are bombarded with messages about love, sex and happy families. When scrolling through the news, adverts pop up telling you how ‘you too can meet someone special’ and increasingly love is recognised in different ways. Yet still people with disabilities are almost invisible in these images of love and sexuality. Why is it so different for them? Do we as people who support them still see this as a lower priority? Why is it more important that someone gets training to teach them how to use a bus than having someone to hold hands with on their bus journey? If we think the need for love is part of being human, what does this say about how we see people with learning disabilities?

We concluded in our research that people with learning disabilities need to understand their right to have relationships, but they also need the skills and confidence to be able to challenge situations where they rights are being denied. Commissioners have a role to play in ensuring services are respecting and protecting people’s rights. Providers should recognise their legal duties under the Human Rights Act 1998, which includes respecting and facilitating people’s decisions. In regard to rights around sexual relationships, services need to have clear, explicit organisational policies and to provide appropriate training for frontline social care staff.

We hope that the Research in Practice for Adults Webinar will help staff to understand why people with learning disabilities may need specific support around sexual relationships and give ideas on the best way to support people to enable them to fulfil their wishes to have relationships.

Take a look at the full research findings.

About the author

Anna Marriott is Research and Evaluation programme Lead at NDTi. Her primary area of research and recent work has been around health inequalities for people with learning disabilities. This has included a focus on the wider social determinants of health, such as social networks and housing, as well as work around access to healthcare for people.

Thank you to Research in Practice for Adults for allowing us to share this article.

“Special or Unique”: A new report from Disability Rights UK and LKMco

Education ministers should boost the disability-specific elements of anti-bullying guidelines and personal, social and health education (PSHE), a new report urges today (2nd August 2019).

Based on focus groups with 12-14 year old children, the report suggests there is widespread ignorance of disability issues among schoolchildren, even those who have special educational needs or who are disabled (SEND).

Researchers found widespread frustration amongst SEND pupils in both mainstream and special schools at the failure of teachers and school leaders to deal with bullying and to promote inclusive classroom environments.

Special or Unique – Young People’s Attitudes to Disability, which is based on 11 focus groups with a mix of SEND pupils and non-SEND pupils in mainstream and special schools,  is published by the DRILL programme (Disability Research on Living and Learning).

DRILL is a 5 year programme funded by The National Lottery Community Fund, the biggest funder of community activity in the UK, and is led by disabled people. It aims to build better evidence about approaches to enable disabled people to achieve independent living, which is used to inform future policy and service provision, as well as give a greater voice to disabled people in decisions which affect them.

As well as uncovering widespread unhappiness at schools’ response to bullying behaviour, the research suggests that young disabled people are often excluded from social networks and have few friends.

Lead researcher Evan Odell from Disability Rights UK said: “These findings show that, in some areas, little has changed for disabled children in the last 40 years or so.

“Schools, special educational needs coordinators and teachers have understandably emphasised the need for reasonable adjustments and classroom support for pupils with SEND. Now they need to deal with bullying and ensure disabled children have the same chance to develop social skills and share in the experiences that mark out the teenage years.”

The Department for Education should support teachers and schools by developing SEND-specific anti-bullying guidance and establishing a minimum inclusion standard for disability awareness in the PHSE curriculum, the report says.

The disability component of that curriculum, the report suggests, should be co-developed and co-delivered by disabled people’s organisations working with schools and councils.

The focus groups suggest:

  • Many young disabled people don’t see themselves as disabled – with disability most frequently linked by SEND and non-SEND pupils to use of a wheelchair – or understand why they received extra support or ‘reasonable adjustments’
  • Researchers felt this could be because of a wish to keep a degree of privacy and control
  • Asked to describe themselves many SEND children used self-deprecatory terms such as annoying or lazy – something the researchers suggest could reflect ‘gallows humour’ or a defensiveness that might affect them asking for help or support
  • Pupils with SEND want their schools to be more proactive in facilitating their social and educational inclusion and reducing bullying
  • Despite that, many SEND pupils spoke positively about the subjects or activities they enjoyed – suggesting that other demographic factors are more important than disability for disabled children in an accessible environment that provides sufficient support.

The report argues that supporting pupils with SEND to better understand their disability and the reasonable adjustments and support they can access, could improve academic outcomes and better prepare them for life with disability.

Kate Bowen-Viner, Senior Associate at LKMco, who provided support with the design of the research, said:

“We hope this research will help teachers, school leaders and policymakers better understand how they can support young disabled people. The research also highlights the value of creating forums for young people to reflect critically on the perceptions they have of their peers with special educational needs and disabilities.

The report’s other recommendations include:

  • School leaders should foster greater openness about SEND and disability in the school, and support pupils with SEND to understand their own disability.
  • Local disabled people’s organisations should be involved in planning and delivering PSHE lessons on disability.

A copy of the full report is available here.

News: First publication from the Chronic Illness inclusion Project

We are very excited to share the first publication from the Chronic Illness inclusion Project research with you.

Stories of our Lives is a compilation of 5 case studies from our 8 week online focus group on benefits and work last autumn. (Pdf and Word versions attached). These powerful testimonies illustrate some of the themes we will be exploring in our final project report:

  •  Energy impairment is a common experience across many different health conditions and disease categories.
  • People with energy limiting chronic illness have a strong desire to contribute to society but are locked out of mainstream employment employment models.
  • The strategies for inclusion and equal citizenship of people with ELCI often lie outside of formal employment.
  • Assessment systems for disability benefits do not capture the impact of energy impairment, especially the cognitive features.
  • Existing forms of disability employment support do not address the barriers to work with energy limiting chronic illness

There is much more to tell and we hope to secure support to produce a full policy report on social security and employment with chronic illness in due course.

The Chronic Illness Inclusion Project is about much more than social security and employment. Look out for our manifesto for inclusion and final report at the end of 2019.

With best wishes,

Catherine Hale.

Please download paper at reclaiming-chronic-illness

For further information about the project please follow the link chronic-illness-citizenship-mobilising-collective-voice-social-change/

 

News: A paper from Barod based on the DRILL-funded AWPF research.

We are delighted to say our paper with Jan Walmsley, based on the DRILL-funded AWPF research, has just gone live.

The link to the overview of the paper can be found below.

https://www.tandfonline.com/doi/full/10.1080/09687599.2019.1613960

There are a limited number of free links we can send to people who do not have university access to the journal. If that applies to you, please contact http://barod.cymru/

For further information about the project follow the link to bridge-changing-attitudes-communities-turning-skills-experience-earnings-self-advocacy-organisations-self-advocates/

 

Blog: The Chronic Illness Inclusion Project

I’m on my way to Belfast to present the findings of our research to the DRILL team. For someone who works from bed and hasn’t got out and about much for the past 30 years, this feels momentous.

The Chronic Illness Inclusion Project has collected masses of valuable knowledge and data on the lived experience of chronic illness. Four months of online focus groups and a survey of over 2,000 people. This will be the first time we share any of it, in the lead up to our report and manifesto at the end of 2019.

It’s exciting because I think our work is revealing a hidden side to disability: the unhelpful and even hostile attitudes to people with invisible and energy limiting chronic illness and ways these attitudes disable us. I look forward to hearing the response to our presentation. I hope our work will serve to expand understandings of what ableism looks and feels like, and lead to new ways of challenging it.  People with energy limiting conditions are the second largest group of disabled people in the UK so it’s vital that our lived experiences are heard.

It’s also exciting because, as well as looking forward to meeting the DRILL team, I will be meeting our advisory group member and volunteer, Victoria Clutton, for the first time. Most of my colleagues in the CIIP have never met in person before. We collaborate online from different parts of the country. This meeting is a rare opportunity to see each other, and be seen, face to face, and the DRILL team has stopped at nothing to get us here and meet our needs.

It’s also a huge challenge. Will I be wiped out from the travelling? Will I have one of my frequent but random bad days and not be able to do credit to all our work? Even on a good day, I can’t deliver a presentation for more than 5 – 10 mins without my brain shutting down. So I’ve been given extra time as an adjustment.

Our presentation on 5th June is just a small part of an exciting agenda about the legacy of this groundbreaking research programme. I want to hear about the work of others. I want to be part of the conversation. But it’s a full day programme and my overall function is limited to two to three hours at best. The rest of the time I’ll be lying down and/or in a stupor, to put it bluntly. It’s frustrating to have to miss out.

But these challenges aren’t just mine, they are common to the chronic illness community. With all the best support in the world we often just can’t take part in things as we would like to. So hopefully this event will also serve as a vital opportunity to bring to light the access issues faced by people with energy limiting illness and begin a conversation about what inclusion means when barrier removal isn’t enough to enable participation.

Catherine Hale.

 

Blog: ‘Match Me – what works for effective allocations of adapted/ accessible social housing in Scotland’.

This reflection highlights the enablement of two self-identified disabled individuals involved with the DRILL funded project:

‘Match Me – what works for effective allocations of adapted/ accessible social housing in Scotland’.

 Project Context

Match Me was a 21 month research project looking into the allocation of adapted and accessibly designed social housing for disabled house seekers/tenants. The project examined what works and what does not. The project partners included Horizon Housing, Housing Options Scotland and the University of Stirling. Three local authority case study areas took part in the research. The project tracked the lived experiences of twenty-eight households with a disabled social housing applicants/new tenant over course of one year. Each household was interviewed twice. Alongside this, observations were carried out into the allocation systems used by the three local authority case studies. Match Me used a co-production approach through steerage from a Project Advisory Board, recruitment of three self-identified disabled Peer Researchers and delivery of three all day feedback and discussion sessions held within each of the local authority case study areas.

Match Me Research Assistant

Hello, I’m Dr Dianne-Dominique Theakstone. I worked as a Research Assistant on the Match Me project. I’m registered blind, thirty-six years old and live in Stirling. I was involved with the early inception of the research and all the way through the pilot study in 2016. My support needs as an early career researcher are mainly around access to written information and sighted-guide assistance during field work in unfamiliar environments.

The national scheme called Access to Work provided funding for a support worker. I worked three days a week on the Match Me project and utilised twelve hours of support worker services. My support worker was able to help me access pdf files, for instance, which were inaccessible for my laptop with Jaws (a type of speech software). My support worker assisted me to navigate websites especially where there was a lot of information to skim read or where there were inaccessible features, such as unlabelled buttons for Jaws to recognise. My support worker would proof read written materials that I produced and help with the creation of PowerPoint presentations for local authority feedback sessions. I conducted interviews with disabled social housing applicants/tenants in their homes or in public spaces. Although I’m a Guide Dog Owner, I currently have Merlin a very handsome three-year-old black lab, I need to know a route in order to give Merlin instructions on where to guide me. Being totally blind I also found social interactions within group environments challenging due to the lack of eye contact. My support worker would assist in group settings during the project by alerting specific individuals that I wished to speak to them or by distributing project materials on my behalf.

I’m grateful to DRILL for providing the opportunity for me to work as a Research Assistant on such a fantastic project which produced a unique robust evidence-base around disabled social housing applicants/tenants lived experiences. I’m aware of the challenges facing disabled people in general who seek employment. The Match Me project greatly developed my skills as an early career researcher, especially in the area of supervision of peer researchers. I found everybody on the Match Me team inspiring and I look forward to taking my confidence and passion forward in future co-production research.

 

Match Me Peer Researcher

Hello, I’m Zack (not my real name) and I was a Peer Researcher on the Match Me project. I chose anonymity while taking part on the project. I’m in my sixties, registered blind and live in a rural location in Scotland. The role was attractive to me because it enabled me to work with Disabled persons while trying to seek out the problems, they may be experiencing in finding suitable adapted accommodation. This was relevant as I had a poor experience of housing issues when I became classed as disabled.

My experience of the Match Me project was I met some inspirational people both as interviewees and people in the project itself. I found that the training for the Peer Researcher role created a supportive environment. The training session lasted 4 hours. The first half covered an overview of the project, the peer researcher role, gaining consent, PVG checks and travel expenses. The second half focused on key terms used in interviews (such as informed consent and anonymity), field work safety procedures, good listening skills, the interview schedule and a mock interview which I enjoyed. The Research Assistants were very supportive in enabling me to shadow a few interviews before supervising my interview skills.

I found that the main challenges in my area is it consists of very remote areas. Even when public transport is usable, such as trains, there can still be problems when engineering work is undertaken as the main station is unable to accommodate relief bus services by the entrance to the station. This involves a very long walk away from the station and unfortunately there is no passenger assistance either to or from the replacement service. Local bus services are limited as well as not reliable. Fortunately, the Match Me project was very accommodating over travel expenses, normally refunded on the same day or following, which enabled the Peer Researcher to fulfil their role.

I would finally add that the whole experience was astounding, and I would definitely get involved in another project with the team. I’m already recruited to help out as a Peer Researcher on another co-production project called ‘My Support My Choice: users’ experiences of Self-directed Support in Scotland’ run by Self Directed Support Scotland and the Health and Social Care Alliance. I recently graduated with a BA (Hons) in Media Studies and I’m looking forward to remaining an active ambassador and role model for local disability related organisations.

 

 

 

News: University of Worcester Guardian Article

The University of Worcester has launched groundbreaking research into the nationwide shortfall of disabled foster carers. It aims to discover what barriers stop disabled people from applying to become foster carers, and how these can be overcome.

Initial findings from the research, which is funded by the Drill programme (Disability Research on Independent Living and Learning) and the National Lottery, have identified attitudes, fear of benefit loss, wording used by foster agencies, and lack of role models as barriers to disabled people fostering.

“There’s a stigma attached to disability that determines how agencies view disabled people who might apply to be foster carers,” says Peter Unwin, principal lecturer in social work at the University of Worcester and the project’s lead researcher. “They tend to see only the disability and what you can’t do. It’s a very negative mindset that is robbing children of a caring environment and a potential new home.”

For further information about the project please visit mutual-benefits-potential-disabled-people-foster-carers/

Full article available at the guardian foster-carer-best-thing-disabled-people

 

 

News: Barod Interim Report

The Bridge is a two-year research project looking at how people with learning disabilities can have real work for real pay.
We are learning about four outcomes:
● How self-advocates can get real work
● What changes when self-advocates see themselves as workers
● How self-advocacy groups can become more independent by trading
● How being more business-like changes how self-advocacy groups are viewed.
The Bridge is funded by Big Lottery through the Disability Research on Independent Living and Learning (DRILL).

For further information on the project please follow the link changing-attitudes communities turning skills experience earnings self advocacy organisations self advocates

Full report available for download at The Bridge – interim report final version April 2019

News: Do you want to have your say about adult social care?

Call for research participants:

If you are a disabled person in Northern Ireland who has experience of adult social care, we would like to interview you for a piece of research called “Is It Me?” How attitudes in the adult social care system impact on the independent living choices for disabled people.”

We want to find out from disabled people how attitudes towards them, good or bad, have impacted upon their social care and on their choices and experiences of independent living. These attitudes might come directly from staff delivering the services, or from the policies and management of adult care services.

Adult social care can be provided by Trusts, the voluntary and community sector or privately. It can include:

  • Day care
  • Domiciliary care (care in

the home)

  • Nursing home care
  • Residential home care
  • Meals on Wheels
  • Social work
  • Respite
  • Information/Advice/

Counselling

  • Provision of equipment

We believe that disabled people have great expertise because they have lived experience of this issue. We really want to hear what disabled people have to say. These interviews will form the backbone of our research.

We are conducting interviews now. We can to arrange for the researcher to meet you near where you live, or we can arrange to do interviews over the phone, or online. If you would like to be interviewed please contact the DRILL researcher Darlene Corry by phone on 028 9029 7880 or email her at [email protected]

This is a research project led by Disability Action NI through the DRILL (Disability Research on Independent Living and Learning) Programme. The research is being done in co-production with disability activists who understand the rights of disabled people and adult social care.

For further information about the project please follow the link is it me how do attitudes within the social care system impact on the independent living choices of disabled people

 

News: Boardroom Apprentices wanted for incredible journey.

Could this be you?

Are you willing to give your personal time and play your part in something that really matters to you? Be prepared to be pushed outside your comfort zone?  Eager to learn and get involved?

Must be passionate, committed and share our values. No Board experience. Open to all ages (16+), all backgrounds and all abilities.

In return you get:

12-months experience on a Board within the public/third sector

Training to enhance your knowledge and understanding

A dedicated board buddy and support from fellow Boardroom Apprentices

Play your part in effecting change in our boardrooms

If you are interested in the programme then you can find more information at www.strictlyboardroom.com/apprentice

You can also find us on Twitter @BoardAppr or Facebook at https://www.facebook.com/boardroomapprentice/

Please note that the closing date is Monday 20th May at 4pm sharp and all applications must be completed in one sitting.