Tizard News and Events

Melina Malli (PhD student) and Prof Rachel Forrester-Jones have recently published an article looking at the attitudes of adolescents towards their peers with Tourette’s syndrome (Journal of Developmental and Physical Disabilities). The article is available on the Tourettes action blog page.

Abstract:  A high percentage of children and adolescents with Tourettes Syndrome report that they have experienced bullying, also social exclusion and isolation. Young people without Tourettes also report that they would be less willing and more reluctant to interact with people with Tourettes Syndrome on some occasions. However, youth without Tourettes have never been asked what they know about the condition and why they would exclude an individual with Tourettes Syndrome from their social group.
Our study looked into how tic-free adolescents view youth with Tourettes Syndrome; what they knew about the condition and their attitudes towards their peers with the Syndrome.

The Tourettes action page also has an inspiring video looking at how young people deal with this.

Exploring the service models available for promoting well-being and positive outcomes for people falling below the threshold for social care support.

With the continuation of the recession and the cuts within social care in particular, the threshold at which people become eligible for social care support has risen in the UK, meaning that many people with less substantial needs are getting very little support, if any. This includes those with mild intellectual disabilities, those with Asperger syndrome, and people with mental health issues. Although these people can manage their day to day affairs for the most part, they remain vulnerable to becoming victims of crime and victimization, to developing mental health conditions and have poorer health status, or to living in poverty with inadequate support to find or keep jobs. There is a substantial need for “light touch” services that are primarily preventative in nature and which ultimately can reduce costs in the long-term. Some of these light touch services already exist in the UK but in not in any systematic way.

This study aims to explore the models that currently exist in the UK and further afield to provide light touch support to people with mild intellectual disabilities and / or Asperger syndrome (including those with mental health needs), who usually are not eligible for social care. The focus will be services that can be used to promote security, well-being and autonomy, and prevent the need for more intensive services now and in the future. The sort of services that might fit into this category are for example advocacy services, volunteer mentor or contact person systems; drop in centres, with options for social networking, general advice, signposting (e.g. for benefits), personal development opportunities (e.g. job seeking skills, use of IT, personal safety etc.). Our main focus is on supports for adults but we are also interested in learning about services aimed at young people in transition to adulthood.

If you commission, provide, use, or know of such services / supports, we would be very interested to hear from you. We do not need any personal information, just information about the nature of the services and the target groups at which they are aimed. If you are able to fill in this brief on-line template, that would be particularly helpful. However, a short description in an email would still be valuable. (You can find our contact details in the survey link.) Please send us your response by January 15, 2017.

Based on the information returned to us and a systematic search of the academic literature we will produce a short report describing the models of support, highlighting the ones that are available in the UK. The report will be made available on-line.

Thank you!

Prof. Julie Beadle-Brown   Tizard Centre, University of Kent
QORU | Quality and Outcomes of Person-centred Care Policy Research Unit

The SHIEC group (Sustainable Hub of Innovation Employment for People with Complex Needs) met on Monday 21 November 2016 to look at what had been learnt and how the lessons learnt could be moved forward.  Viv Cooper, CEO of the CBF, set out the aims and outcomes of this group set up specifically as a demonstration project to prove individuals with complex needs could be supported to find and maintain employment.  The Hub was made up of organisations and stakeholders  (large and small) who would support individuals into work.

Prior to offering support, SHIEC first had to help providers change their perceptions, to understand that with direct support, individuals with complex needs can work effectively.

The Seminar included speakers from the Tizard Centre, Dr Nick Gore, who has been very involved with the project since its inception and offered a overview and introduction to SHIEC, Prof Rachel Forrester-Jones who gave a talk on how to move the project on in a realistic direction and Jo Ruffels who gave a case study from the Tizard’s experience of employing a member of staff with complex needs.

Rex Richardson from Linkage, a Lincolnshire based charity that supports people with learning disabilities, offered an insight into how people with complex needs can make a valued contribution through employment.

Those attending included representatives from the Department of Health, Dimensions, United Response, Avenues, BILD, Challenging Behaviour Foundation, Bangor University, NVFF, Foundation for People with Learning Disabilities, Local Government Association, Department for Work and Pensions, NHS England and Linkage Community Trust.

Dr Michelle McCarthy, Reader in Learning Disabilities, Tizard Centre, has made a podcast as part of the Spotlight series focusing on disabled people experiencing domestic abuse and the services available to them.  Michelle spoke to Natalie Blagrove about her research with survivors who have learning disabilities and what it revealed about their perpetrators and the barriers to their support.

To watch the podcast

To read the transcript of the episode

The Gulbenkian cinema (University of Kent, Canterbury) will be showing the film “My feral heart” on Saturday 10 December at 1500 hrs.  This will be preceded by a short introduction from Square Pegs; a not for profit drama group based in Kent, who help young people to develop communication and social skills, confidence and self esteem through weekly drama workshops, creative activities, theatrical performances and social events. We work with young people age 7 – 25 who have a learning disability, social communication difficulties or who find it hard to fit in with mainstream activities.

There will also be a post show discussion and question and answer session which everyone is invited to attend and which Dr Nick Gore, Tizard Centre, will be running.

A sudden bereavement throws Luke, a fiercely independent young man with Down’s syndrome, into a daunting new environment where he finds unexpected support from his feisty, streetwise carer and a local heir dealing with his own demons. As friendships bloom and long-buried secrets are revealed, Luke verges dangerously close to disaster. My Feral Heart is a beautifully realised, understated character study bolstered by strong performances, distinctive cinematography and a deeply evocative score. (Taken from Edinburgh International Film Festival 2016 Programme).

To book a ticket

On Wednesday 9 November Prof Murphy chaired a conference for Cartref Homes, “Supporting learning disabled offenders in the community: balancing rights and restrictions“. Speakers included Baroness Finlay, Prof Murphy, Jenny Talbot (from Prison Reform Trust), Jimmy Kerrigan (Kent LD commissioner), Dr Neil Sinclair (consultant clinical psychologist) and Andy Inett (consultant forensic psychologist). There were 75 delegates including nurses, psychologists, probation officers, policemen, psychiatrists, and others; many of them local but some from as far as Cheshire.

The presentations are available on the Tizard resources page.

Help us to pilot a new questionnaire designed to measure the quality of life of people with learning disabilities or autism who use adult social care services.

This project is a pilot of a new questionnaire that is part of the Adult Social Care Outcomes Toolkit (ASCOT) (see www.pssru.ac.uk/ascot). ASCOT questionnaires are used to collect information about the quality of life of people who use social care support. This information may be used to monitor, evaluate and improve the quality of services.

For full details and how toinvitation-letter-to-organisations-2

The University online booking system is now open to register for either of our courses.

Person-centred active support training will take place over two days, 13 February and 3 April 2017 at the University of Kent, Canterbury campus.  Full details of the two days and training materials required can be found on our web page.  The assumption will be that those attending will have experience of working with people with intellectual disabilities in a facilitative way and are working in an organisation where they can gain hands on practice in between sessions and where they can produce videos for certification.

If you wish to register and book a place please go to the online store.  A reduced fee is available for current students and members of the TPN.

Talking Mats communication symbols tool is based on extensive research and designed by Speech and Language Therapists.  It uses unique specially designed picture communication symbols that are attractive to all ages and communication abilities and are used by clinical practitioners, carers and support workers in a wide range of health, social work, residential and education settings.  This training will be held on 14 February and 4 April 2017 from 0900-1200 hrs at the University of Kent, Canterbury campus.  Full details can be found on our web page.

To register and book a place please use the University of Kent online store.

If you have any queries regarding the above courses please contact Dr Jill Bradshaw (J.Bradshaw@kent.ac.uk)

This year’s Seattle Club Conference is being hosted by Glasgow Caledonian University in association with the University of Glasgow and Napier University Edinburgh.

An impressive number of oral presentations and poster presentations have been accepted from members of Tizard. They include:
Dr Anne MacDonald, Honorary Researcher “An organisational approach to reducing restrictive practices for people with intellectual disabilities” (poster presentation)
Jessica Tame, Dr Paraskevi Triantafyllopoulou, Frances Beaumont “Sensory profiles of adults with autism: a comparison with the general population and adults with dyspraxia” (oral presentation)
Kitty Hyslop, Dr Jill Bradshaw & Prof Julie Beadle-Brown “Using talking mats to explore experiences of person-centred active support” (poster presentation)
Dr Peter Baker & Rebecca Hardiman “Investigation of the applicability of trauma as a framework for understanding staff response to challenging behaviour presented by people with intellectual disabilities” (poster presentation)
Rebecca Hardiman “Physiological arousal and challenging behaviour in boys with Fragile X Syndrome” (poster presentation)
Dr Claire Bates – presentation looking at the importance of love to people with learning disabilities.
Serena Brady, Jessie Humphreys, Prof Peter McGill & Dr Nick Gore “The characteristics of residential educational settings in England for young people with intellectual or developmental disabilities” (poster presentation)
Mark Brown “I wish I had learnt to keep myself safe”  Sexuality and relationships education for people with autistic spectrum disorder (poster presentation)
Dr Nick Gore “The goals and outcomes for intervention (G0-For-It)” (poster presentation)
Clare Melvin “Adapted sex offender treatment programmes for men with autism spectrum conditions: clinician and service user views” (poster presentation)
Clare Melvin “Autism and offending: a systematic review of treatment” (poster presentation)
Nicole Palmer “Are people with intellectual and developmental disabilities who lack capacity to consent at risk of being excluded from research?  Ethical implications of the UK Mental Capacity Act 2005″ (oral presentation)

In 2011 Professor Theresa Gannon secured a grant to undertake a three year project on the development, implementation and evaluation of a specialist treatment programme for criminal firesetters.  As part of this programme, Magali Barnoux (Post Doctoral Researcher at Tizard) was awarded PhD funding to undertake some theoretical and empirical work to contribute towards the overall outcomes.

The findings in Magali’s PhD contributed towards the first stage of the grant and helped to develop a new model describing how the offence process unfolds for imprisoned male firesetters (Barnoux, Gannon & O Ciardha, 2014).  During the three years Magali also undertook work as a Research Assistant for Prof Gannon on other parts of the grant.

Overall the grant resulted in the first comprehensive theory of deliberate firesetters and the first effective treatment programme for offenders, which is being adopted by Australia, North America and Europe.

More information is available.