University of kent – tizard centre aut 2016 122596

Newsletter Tizard round up Page 2

IASSIDD 2016 Page 6

Forthcoming events Page 8

Bringing you the latest news from the Tizard Centre at the University of Kent

Tizard Centre

Autumn 2016

2 University of Kent Tizard Centre

Tizard round up

Professor Rachel Forrester-Jones, Director of the Tizard Centre It has been an exciting year for Tizard.

Research studies ending with outcomes published have been replaced by a high number of new research projects. We have also been very busy disseminating our work at major conferences such as the IASSIDD 15th World Congress in Melbourne, Australia, and the 11th Autism Europe Conference. We have record numbers of students, particularly to our MSc/MA Postgraduate degrees in Intellectual and Developmental Disabilities, Applied Behavioural Analysis and Positive Behaviour Support. This coming academic year we will be launching a new postgraduate programme in Forensic Intellectual and Developmental Disabilities (IDD) as well as undergraduate distancelearning programmes in IDD and

Autism.

Centre for Health Services Studies (CHSS) and the Centre for Child Protection (CCP).

Successful promotions include Julie Beadle-Brown and myself, promoted to Professors, and Dr Nick Gore promoted to Senior Lecturer.

We have just moved from Woodlands to a new facility (Cornwallis North East) and are still unpacking as I write. This has already enabled us to broaden our facilities. We now have dedicated rooms to serve our growing consultancy remit, managed by Dr Jill Bradshaw and our new offices are more accessible. We are also closer geographically to our School of Social Policy, Sociology and Social Research (SSPSSR) and our sister centres Personal Social Services Research Unit (PSSRU), the

I am delighted to be taking over as Director. The Tizard Centre is made up of a rich and diverse hard working team of experts in their fields and excellent administrators. Collectively, our work spans the life cycle of people with Intellectual and Developmental Disabilities (IDD) and those with mental health problems and older people (as demonstrated below).

We remain focused on our mission: to improve the quality of life of vulnerable children and adults.

TIZARD CENTRE

University of Kent Cornwallis North East Canterbury kent, CT2 7NF www.kent.ac.uk/tizard

Tizard Centre-University of Kent

twitter.com/TizardCentre

University of Kent Tizard Centre 3

Research Projects update

Project: Mapping and Understanding Exclusion: Services, laws and policies in the mental health field in Europe Research team Professor Julie Beadle-Brown, Dr Agnes Turnpenny and Gabor Petri This project will be carried out in partnership with Mental Health Europe and aims to update the previous Mapping Exlusion Report published 4 years ago. The research will map institutional and community-based services in Mental Health and deinstitutionalisation strategies across Europe. It will also explore: • The extent and reasons for forced admissions and treatment, the use of seclusion and restraint.

• The cross-border perspective, particularly the phenomenon of sending adults with psychosocial disabilities to other countries for treatment

• The experiences of EU citizens who become ill in other member states of the EU • Innovative human rights compliant practices in the field of mental health The project is funded by Open Society Mental Health Initiative – Open Society Foundations and rums for 12 months from September 2016.

For further information contact: A.V.Turnpenny@kent.ac.uk

Project: Transition to adult social care from residential schools Research team Professor Peter McGill, Dr Nick Gore, Serena Brady Given national scrutiny relating to out of area placements for adults with learning disabilities, lack of evidence that they provide more specialised or better care than local placements, and the sometimes prohibitive costs of such

placements, it is important to identify factors which may lead to an adult with a learning disability being placed out of area. Previous research suggests that prior placement in a residential school may contribute to placement out of area as an adult. However, definitive evidence is lacking and this project seeks to explore the possibility of such a relationship and, more generally, to examine the transition process to adult social care placements following attendance at a residential school. The aims of the current project are: • Based on retrospective analysis of data derived from residential schools and adult commissioners, to examine the type and location of adult support settings where individuals who have transitioned from a residential school are placed.

• Based on qualitative analysis of interviews conducted with individuals who have been involved in the transition process, to examine factors which may lead to a young person being placed in- or out-of-area following transition from a residential school.

Project: The mATCH Study Research team Dr Peter Langdon, Dr Magali Barnoux The University of Kent, the University of East Anglia, University College London, Hertfordshire Partnership NHS Foundation Trust, Leicester Partnership NHS Trust and Partnerships in Care have been awarded funding from the National Institute of Health Research to conduct a three year project called The mATCH Study.

The idea for the study came out of the Clinical Research Group on Forensic Intellectual and Developmental Disorders (CRG FIDD), originally set up with funding from the Mental Health Research Network (MHRN), National Institute of Health Research.

Within the mATCH Study, we want to understand what is happening for people with autism who are detained in hospitals so we can hopefully improve care pathways.

The project has three key aims: • To further develop a proposed sub-typology for people with autistic spectrum disorders (ASD) detained within hospital.

• To test the validity of these subtypes, by examining the relationship between these subtypes, clinical data, and neurocognitive variables.

• To examine the relationship between these subtypes and patient outcome in order to understand the most appropriate care pathway for each subtype.

The project started in October 2015 and will run for three years to October 2018.

Why are we doing this?

Some people with autistic spectrum disorders (ASD) are detained in hospitals under the Mental Health Act (2007) because of mental health problems, behavioural problems and risk.

While all these patients have a diagnosis of ASD, their clinical presentations, risk behaviours, treatment needs and responses to treatment are very different.

An inability to capture these differences adequately means that some patients stay in restrictive hospital settings for longer than needed. To minimise this risk and improve care, we need to tailor the care pathway to the needs of each individual patient. The current study aims to do this in two ways (1) systematically investigate a sub-typology of people with ASD within psychiatric hospitals to examine whether this may help allocate people to receive the appropriate care, and (2) collect information over 1 year which can be used to improve their care pathway. This study will help to design better inpatient services and directly benefit patients by minimising the risk of them being in restrictive hospital settings for longer than necessary. We have asked people with ASD, and carers and family members to take part in this and share in the oversight of our research. mATCH web page: https://research.kent.ac.uk/match/about-us-2

4 University of Kent Tizard Centre

Further research areas

1 RAG Group receiving their certificates 2 Sandra, Fragile X Society Support and Development Worker with Chloe; a young woman who lives with Fragile X and has started her own business

Fragile X Syndrome Fragile X Syndrome is the most common inherited cause of learning disability; approximately 15,000 people in the UK live with this genetic condition. Though, there is still a lack of understanding and awareness of the syndrome.effects of Fragile X are lifelong, and include an increased risk of certain physical health issues, as well as anxiety and sensory issues that can make day-to-day events seem overwhelming. Thanks to the fantastic work of researchers and clinicians, an increasing amount is understood about Fragile X, including how to provide effective support. However, very little work has been done to understand the characteristics and lived experiences of adults with Fragile X, and the work that has been done has predominantly included those living in the USA. This gap in our understanding has implications for those providing support.

Therefore, this year the Tizard Centre partnered with the Fragile X Society, the UK charity dedicated to and living with Fragile X, has decided to address this clear research need.

Supervised by Becky Hardiman (CEO of the Fragile X Society and PhD Student at the Tizard Centre) and Peter McGill, Jenn Howard (studying Intervention in Intellectual and Developmental Disabilities) conducted the first national survey of adults living with Fragile X Syndrome in the UK.

This study found that individuals with Fragile X Syndrome could benefit from more services, respite and benefits as well, partly due to a large number of individuals still living with their families who provide the majority of their day-to-day support. Additionally, this study found that there is a high number of adults who are overweight or obese and may suffer from other health

RAG The Researching Altogether Group at Tizard is made up of a group of service users with learning disabilities who advise Tizard Researchers on aspects of their work. We meet every 3 months and really enjoy working altogether to discuss and provide feedback on a range of research materials such as questionnaires and accessible abstracts. Our next piece of work is to create accessible videos about the research that is carried out in Tizard, and we are looking forward to producing videos which can be enjoyed by a broad audience.

At our most recent meeting in June, we said a huge thanks and farewell to some of our members, Daniel., Melanie, Karen and Richard (pictured) who were presented with participation certificates. We look forward to welcoming new members to the group at our next meeting and continuing the work of RAG. If you would like to find out more about the work of RAG please contact Dr Michelle McCarthy at M.McCarthy@kent.ac.uk

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conditions or display challenging behaviour. The results of this survey will directly feed back into the work of the Fragile X Society and support the development of projects aimed to address some of the key needs identified through the research. www.kent.ac.uk/tizard/research/research_projects/ new_research-pages/phd_research.html

University of Kent Tizard Centre 5

Short courses

Short Courses at the Tizard 2016/17 This year we will be running training for Trainers in Person Centred Active Support, SPELL Framework and Talking Mats Person Centred Active Support This takes place over 2 days namely 13 February 2017 and 3 April 2017. The first day will be the main classroom based training and as well as ensuring that potential trainers all have the same knowledge base, it will provided information about some of the key issues for delivering materials. The second day will focus on the skills and knowledge required for training and leadership. Participants are required to attend both days.

The assumption will be that people 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 their videos for certification.

For further information or to register your interest in taking this course please email J.Bradshaw@kent.ac.uk

SPELL Framework training Dates still to be confirmed The SPELL Framework, developed by the National Autistic Society in conjunction with people with autism, their families and professionals, is a socially valid framework that supports the understanding of autism and the development of autism friendly environments and approaches. It is an individualised and person-centred approach that centres around 5 key elements.

1 2 3 4 5

Structure Positive approaches and expectations Empathy Low arousal Links

Day 1 10.00-16.00 Understanding people on the autism spectrum (SPELL 1) This day will focus on understanding autism and how it affects people with autism and their families.

Day 2 10.00-16.00 Supporting people on the autism spectrum (SPELL 2) This day will provided detailed information on how to use the SPELL framework.

Both of these days will combine presentation with exercises, discussion and videos. These are suitable for anyone who is supporting children or adults with autism in any context, including parents, teachers, support staff, social workers, local authority autism leads, or people working in the Criminal justice system.

Day 3 09.30-16.30 Training for trainers This day will focus on providing guidance around using the Understanding and Supporting children and adults on the autism spectrum training materials and will include any current and planned updates to the materials. It will also assess your ability to provide training using the materials which will form the first part of the accreditation process.

The training takes place over 3 consecutive days. www.kent.ac.uk/tizard/courses/short/index.html?t ab=spell To register your interest email J.D. Beadle-Brown@kent.ac.uk

Talking Mats Talking Mats communication symbols tool is based on extensive research and designed by Speech and Language Therapists. It uses unique specially designed picture communciation symbols that are attractive to all ages and communication abilities and is used by clinical practitioners, carers and support workers in a wide range of health, social work, residential and education settings. It helps people to organize their thoughts and express their views.This 2 part foundation training is structured to allow participants time to reflect and develop their own communication skills between the two sessions. Attendance at both sessions is required. Each participant will also be provided with a topic set so that you can put the resource into practice straight away.

This training is running on the following dates:

Course one 14 October 2016, 09.00-12.00 and 23 November 2016, 14.00-17.00 To register and book a place please go to the University online store. The fee for the training is ÂŁ190 with a reduced fee for existing students of ÂŁ180.

Course two 14 February 2017, 09.00-12.00 and 4 April 2017, 09.00-12.00 If you wish to register your interest for this please email J.Bradshaw@kent.ac.uk

6 University of Kent Tizard Centre 1 Nicole Palmer, PhD student 2 Professor Rachel Forrester-Jones

2015/16 round up

Tizard Centre at the IASSIDD 15th World Congress The 15th World Congress of the International Association for the Scientific Study of Intellectual and Developmental Disabilities (IASSIDD) in Melbourne, Australia was attended by a number of the Tizard Centre’s academics, researchers and students.

Senior academics from the Tizard centre were involved in the organisation of the event either as part of the scientific advisory committee, as track directors or reviewers. Many of Tizard’s staff and students were attending the conference to present their research findings as part of symposia or as poster presentations over the 5-day event. PhD students Claire Melvin, Aida Malovic and Lisa Richardson were all won a travel grant to be able to attend the conference.

The opening ceremony of the conference included a welcome to country and smoking ceremony: a significant ancient ceremony performed by Aboriginal and Torres Strait Islander people to welcome visitors to the country and a performance by the Australian boys choir of the Australian national anthem.

There was a welcoming address from the Governor of Victoria and presidential address by the IASSIDD president Professor Vianne Timmons. Finally Tizard’s own Glynis Murphy participated in a past presidents forum, alongside Trevor Parmenter and David Felce discussing their achievements as presidents and future challenges for IASSIDD. Following the opening ceremony there was 4 days of key note addresses, symposia, roundtable discussions, special interest research groups meetings and poster presentations. Some highlights from the 4 days included Glynis Murphy’s keynote address on people with IDD in the Criminal Justice System, Julie Beadle-Brown as chair and panellist for a master lecture on selfdetermination and Rachel Forrester-Jones being presented with an award for best research poster.

The following presentations were given by members of the Tizard team:

Dr Paraskevi Triantafyllopoulou Lecturer at the Tizard Centre Oral presentation: Sensory profiles of Adults with Autism: a comparison with the general population and adults with dyspraxia Poster presentation: The effectiveness of pharmacological and non-pharmalogical interventions for people with intellectual disabilities and dementia Poster presentation: Ballet burst: an intervention study to improve health and fitness in people with intellectual

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2

Roy Deveau, Honorary Research Assistant

Leah Vanono, PhD student

Poster presentation: on Low arousal approaches to challenging behaviour and an oral presentation on the impact of practice leadership management style on staff experiences when working with people who may show behaviour described as challenging.

Aida Malovic Oral presentation: Adolescents with intellectual and developmental disabilities who display harmful sexual behaviour: Adaptation of measures (Supervised by Glynis Murphy and Simon Coulton) Poster presentation: Keep Safe: earlier intervention for young people with intellectual disabilities and harmful sexual behaviour (Authored by Aida Malovic, Rowena Rossiter, Glynis Murphy)

Poster presentation: implementing service-wide positive behaviour support: a case study

Nicole Palmer, PhD student Poster presentation: 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.

The next World Congress is planned to be held in Glasgow on the 6th-9th August 2019. #IASSIDD16 #IASSIDD19 Professor Rachel Forrester-Jones exhibited her poster in a novel fashion; particular pertinent as her research is looking at ‘clothes and fashion and people with IDD’. This won Rachel a medal for best poster. IASSIDD Melbourne August 2016.

The Seattle Club Conference 2015 The Seattle Club Conference 2015 was held in Cardiff and w as attended by several staff who gave oral or poster presentations: Agi Turnpenny, Lisa Richardson, Claire Bates (currently working with us from Choice Support) and Leah Vanono. The Conference focuses on research in intellectual and developmental disabilities and is open to any researcher based in the UK or Ireland who has new data relevant to the study of IDD. The 2016 Conference is being held at Glasgow Caledonian University in association with the University of Glasgow and Napier University Edinburgh. The deadline for submissions is the 17 October 2016 for anyone wishing to participate.

Once again the Tizard hosted a very popular Research Seminar Series and annual lecture including talks from Dr Nicola Grove, Professor Glynis Murphy, Dr Allyn Thomas, Professor Ruth Northway and colleagues and Professor David Felce.

Every year the University of Kent recognises the success of individual members of the academic staff. We were delighted that three members of Tizard received promotions with Julie Beadle-Brown and Rachel ForresterJones being promoted to Professor and Nick Gore, becoming a senior lecturer. Many congratulations to them all.

University of Kent Tizard Centre 7

Recent posters showing research undertaken at the Tizard Centre

XI Autism Europe Conference The 11th Autism Europe Conference was held on the 16-18 September and this year as well as having a stand at this (managed

by Lisa Richardson) Jill Bradshaw (lecturer) Gabor Petri, Mark Brown and Barbara Dewar (PhD students from Tizard) all presented posters. The Congress focused on the most recent developments across the field of autism, including causes, genetics, diagnosis, early intervention, treatments, education, support, employment, rights and policies.

A Activity ctivity Schedules Schedules for for Children Children with with Autism Autism a nd Severe Severe Learning and Learning Disabilities Disabilities PhD PhD Student: Student: Sarah Sarah Hedley Hedley Dray, Dray, Tiza Tizard rd Centre, Centre, University University of of Kent Kent e:skh21@kent.ac.uk e:skh21@kent.ac.uk Supervisors: Supervisors: Dr Dr Mecca Mecca Chiesa, Chiesa, Tiza Tizard rd Centre; Centre; Prof.

Prof. Robert Robert Johnston, Johnston, Dept.

Dept. of of Psychology Psychology

Problem…

Pr oblem…

A class class of of children children diagnosed diagnosed with with autism autism and and severe severe learning learning difficulties difficulties were were taught taught new new skills, skills, such such as as picking picking up up and and joining joining Lego Lego blocks blocks together, together, via via Discrete Discrete Trial Trial T Teaching eaching (DTT) (DTT) methods. methods. However, However, skills skills that that occurred occurred in in DTT DTT sessions sessions did did not not generalise generalise to child-initiated child-initiated (CI) (CI) play play sessions. sessions. In In the the absence absence of of adult adult prompts prompts and and rreinforcers einforcers (R+), (R+), play play skills skills did did not not occur occur independently. independently.

S Solution? olution?

in complex complex chains chains of of behaviour behaviour in in the the absence absence of of adult adult prompting. prompting. A child child attended attended to a (1993) taught taught children children with with autism autism to engage engage in M MacDuff, acDuff, Krantz Krantz and and McClannahan McClannahan (1993) put the the materials materials away away and and returned returned to the the folder folder to attend attend to the the next next photograph. photograph. ph otograph in in a folder, folder, obtained the corresponding corresponding materials, materials, completed completed the the activity, activity, put photograph obtained the which were were faded faded until until schedule schedule following following behaviour behaviour occurred occurred under under visual visual cues cues alone. alone.

They They named named this this the the Activity Activity Schedule Schedule (AS).

(AS). Physical Physical prompts prompts were were given given with with R+ R+ which

learning difficulties, difficulties, there there is is little little evidence that AS AS are for A lthough some some researchers researchers have have used and learning evidence to suggest suggest that are suitable suitable for Although used AS AS to develop develop new new skills skills in in children children with with autism autism and develop independent those th ose with with a more more severe severe diagnosis. diagnosis. No studies as designed designed by

by MacDuff MacDuff et et al. al. (1993) (1993) to develop independent play play skills skills in in studies could could be found found that that used used AS AS procedures, procedures, as children ch ildren with with a severe severe diagnosis. diagnosis.

Research Question 1

Research Question uestion 2

Can C an children children diagnosed diagnose with severe learning difficulties and autism be taught to follow ph photographic otographic activity activity schedules independently, in the absence of adult prompting?

If children can be taught to follow photographic activity ctivity schedules schedules independently, independently, will wil l independent play behaviour generalise to other child-initiated ild-initiated play play sessions? sessions?

Method M ethod

Method

Nine design. As As Ni ne pupils pupils w were ere given given AS AS training training on on an an individuals individuals basis basis via via a changing changing criterion criterion design. pu pupils pils became became more more independent, independent, they they progressed progressed from from an an initial initial training training stage stage to a used and and ge generalisation neralisation stage stage and and finally finally to maintenance. maintenance. Physical Physical prompts prompts and and R+ R+ were were used gr gradually adually faded faded until until schedule schedule following following occurred occurred under under photographic photographic cues. cues. Component Component co completion mpletion data data were were obtained obtained to measure measure independent independent schedule schedule following following behaviour. behaviour.

Results Results

S Six ix pupils pupils mastered mastered AS AS training training (results (results are are shown shown for for pupil pupil B).

B). They They independently independently completed completed a se sequence quence of of play play activities activities cued cued by by photographic photographic AS AS folders. folders. Skills Skills generalised generalised to new new materials materials when w hen novel novel visual visual cues cues were were added added to their their schedules. schedules. The The 3 pupils pupils who who did did not not reach reach mastery mastery a att the the end end of of the the study study made made progress, progress, as as evidenced evidenced by by increasing increasing trend trend lines. lines.

of AS AS training training on on independent independent play play skills, skills, pupil pupil engagement engagement with with play play T To o measure measure the the effects effects of during CI CI play play sessions sessions that that occurred occurred prior prior to and and during during AS AS training. training. A m materials aterials was was measured measured during provided. No prompting prompting was was given given during during these these sessions. sessions. Data Data was was was provided. rrange ange of of play play materials materials was the range range of of play play materials materials engaged engaged with with and and the the number number of of ta taken ken on on levels levels of of engagement, engagement, the ttypes ypes of of play play materials materials used. used.

Results R esults

Skills Skills acquired acquired during during AS AS sessions sessions generalised generalised to CI CI sessions sessions and and occurred occurred in in the the absence absence of of adult adult prompting. prompting. Data Data collected collected prior prior to AS AS training training was was compared compared to data data taken taken once once AS AS training tr aining had had begun. begun. Following Following the the start start of of AS AS training: training:

1.

1.!! Q Quality uality o off play play developed developed for for all all pupils pupils (results (results are are shown shown for for pupil pupil B).

B).

2.

2.!! T The he range range of of play play materials materials independently independently engaged engaged with with per per session session increased increased for for some some pu pupils pils (results (results are are shown shown for for pupil pupil B).

B). pupil.

3.

3.!! T The he mean mean of of play play materials materials engaged engaged with with per per session session increased increased for for every every pupil.

1

Range aterials used Range o off M Materials used by

by Pupil Pupil B

R Research esearch Answer Answer 1 C Children hildren with with se severe vere learning learning di difficulties fficulties a and nd autism autism can can learn learn to ffollow ollow photographic photographic activity activity schedules sch edules independently. independently.

They T hey can can be taught taught to engage engage in in a variety v ariety of of play play activities activities in in the the absence a bsence of of adult adult prompting. prompting.

= engaged engaged with with

3

2

R Research esearch Answer Answer 2 IIndependent ndependent play play skills skills acquired acquired in in a activity ctivity schedule schedule training training sessions sessions can ca n generalise generalise to other other settings settings and and occur o ccur in in the the absence absence of of adult adult prompting. pr ompting.

R Reference: eference: MacDuff, MacDuff, G., G., Krantz, Krantz, P P.. & M McClannahan, cClannahan, L L.. ((1993).

1993). Teaching Teaching children children with with autism autism to use use photographic photographic activity activity schedules: schedules: maintenance maintenance and and generalisation generalisation of of complex complex response response chains. chains. Journal Journal of of Applied Applied Behaviour Behaviour Analysis, Analysis, 26, 26, 89-97.

89-97.

J ll Bradshaw, Julie Bead Ji e le-Brown, Lisa Richardson, Jennifer Leigh and Beckie Whelton Fu nde d b y

Introduction and Methods

NIHR School oll Forr Social Carre Resear arrch, UK

As part of a wider research project into skilled support (Beadle-Brown et al, early online), infformation about communication was collected using a range of measures. These included observations of social interaction and contact from staff, the use of alternative and augmentative communication (AAC), reviews of written infformation, questionnaires about the needs and characteristics of the people supported and interviews with managers. An observational measure combined the Engagement in Meaningful activities and relationships (EMACR Mansell and Beadle-Brown, 2005), The Active Support Measure (ASM) (Mansell, Elliott & Beadle-Brown, 2005) and a specific measure about the nature and variety of communication methods used by staff and the people they support. In addition, a staff reported measure of adaptive functioning and communication needs was completed by each person's key worker. We looked at written info ormation and we talked to managers. We also rated services according to how 'autism-friendly' they were.

Participants

Services were either nominated by their organisations as providing good support for these groups of people or randomly selected from Care Quality Commission lists fo or the same geographic areas as nominated services. There were 42 participants (from the sample of 35 residential or supported living services) identified by staff as having autism. People with autism were younger, more able in general (ABS 133 vs 97) and showed both more challenging and more selfstimulatory behaviour than those who did not have autism. They also tended to live in smaller settings.

Results

Participant communication and effectiveness of use (%)

Rated by staff as not using verbal communication Communication observed No communication Any verbal Any vocalisation Any ge estures on their own

Gestures + vocalisation Gestures + verbal Object of reference Object of ref. + vocalisation

Object of ref . + verbal Symbols Signs Signs + vocalisation Signs + verbal Communication effective most of the time (inc all) Communication effective all of the time

Autism N=42 50

Not autism n= 58 66

7 38 38 33

9 36 59 22

5 5 2 2 5 61

3 2 5 4 2 59

26

25

21 10 5 2

14 19 3 3

Communication support from staff (%)

s anding verbal Rated by staff as not underrst Communication observed No communication used by staff Gestures alone Gestures with verbal Objects of reference Objects of reference plus verbal Photos Symbols/photos and verbal Sign Sign and verbal Verbal only Communication rated as mostly appropriate

Autism N=42

Not autism N=58 21

14

2 19 50 14 14 7 2 2 2 69 64

Stafff communication was most likely to be either verbal or verbal with gestures, despite many people needing more support in terms of communication (e.g. signed communication or symbols).

0 7 53 10 22 3 2 3 5 81 67

Does skilled support make a difference?

One third of people were receiving skilled support. W hen support was skilled, people with IDD and autism were more engaged and were more likely to have good communication used with them. They were also more likely to have good support to make choices. There were fe ew diffe erences in the quality off life e of people with and without autism, however people with autism were more likely to live in a service where people were active (i.e. engaged in activities that were not sedentary) at least some off the time 42% compared to 17% without autism (X2 (1, n=95)=7.209, p=.007).

Individuals with autism were also engaged in complex household tasksusing gas or electrical equipment for more off the time (z=-2.16, p=.031, r=0.22), however this still represents low levels off involvement in more complex tasks overall. Those with autism were also reported by stafff to participate more in daily living tasks (z=-2.570, p=.010, r=2.88 ). These findings may reflect higher levels off ability in the autism group.

How ‘autism-friendly’ were the services?

Scores relating to autism-friendliness rated on the SPELL framework (%)

Autism N=42

Not autism N=58

Percentage off people living in services where PBS was rated as well implemented overall

23

17

Overall Percentage score on SPELL 75 79 Percentage receiving good, consistent autism 66 76 friendly suppor pp t (SPEL ( L) Percentage living in a setting where the SPELL principle was clearly in p actice: pr Structure 40 48 Positive approaches Empathy

Low arousal

Links (primarily due to presence off PCP)

56 38 20 51

43 42 22

69

There was little difffe erence in autism-friendly practice between generic and autism-specific services. Services providing person-centred active support provided the best support for people on the autism spectrum (in terms of people having something to do and support to communicate choices). The provision of visual structure was generally weak across services and there was little awareness of sensory issues.

8 University of Kent Tizard Centre

Forthcoming events

Other events/courses We will be running short courses on Person Centred Active Support and SPELL training again in Spring 2017.

For full details please see our web page: www.kent.ac.uk/tizard/courses/short We will also be hosting taster sessions relating to Hate Crime, Women in Autism and Debriefing in Spring 2017.

Full details of these will be posted on our web pages shortly: www.kent.ac.uk/tizard/courses/short If you or any colleagues wish to attend these please email me accordingly at J.Ruffels@kent.ac.uk

Research Seminar Series 2016/17

Congratulations!

Each academic year we have a series of research seminars which are publicised on our web page: www.kent.ac.uk/tizard/research/seminars

Congratulations are also due to both Peter Baker and Nick Gore who undertook charitable events in support of the Challenging Behaviour Foundation raising just over £2,000 between them.

Wednesday 26 October 2016 Precious Sango ‘Spirituality and people with intellectual and developmental disabilities: comparing the significance of spirituality in faith and non-faith based care services’ Wednesday 23 November 2016 Dr David Oliver ‘Palliative care and end of life care for people with ID – the latest ideas’

Precious Sango (former PhD student) and Jahanara Ahmed (UG student support officer) who both had lovely baby boys.

These talks are being held at the earlier time of 1630 hrs and will be followed by a short informal drinks reception to which everyone is welcome.

If you wish to attend please email: J.Ruffels@kent.ac.uk

Follow us We use our twitter account to highlight the work we are involved in (conferences, publications, training, work with organisations) and tweet about policy and practice in the area of intellectual and developmental disability. We now have over 2000 followers. Get in touch with us on Twitter and let us know about your work so that we can retweet it. It is a great way of connecting with interesting people.

We also have a facebook page which is a closed group, where we also provide information about our work. People use the group to share, request and discuss information about working with people with intellectual and developmental disabilities. We also advertise conferences, training and jobs on this page. All our welcome.

Tizard Centre

University of Kent, Cornwallis North East, Canterbury, Kent, CT2 7NF www.kent.ac.uk/tizard

twitter.com/TizardCentre

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