LDIAG News Summer 2012
www.ldiag.org.uk
New Advisory Group Meets for First Time The Welsh Government has established a new group to champion learning disability issues and provide specialist advice to ministers on matters affecting people with a learning disability.
Inside this issue:
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After a break of almost two years, the brand new Learning Disability Advisory Group or LDAG met for the first time on 3 September 2012 in Cardiff.
Report on first 6 Real Opportunities annual conference
The previous advisory group (LDIAG) met for the last time back in September 2010 after deciding that the time had come for a new group with a new remit and membership.
Event: Learning 8 Disability Wales annual conference 2012
Deputy Minister for Children and Social Services Gwenda Thomas agreed back in 2010 to set up a new group to advise her on the issues that affect people with learning disabilities but unfortunately this process took far longer than originally anticipated. In July this year Welsh Government were finally in a position to invite a number of organisations and individuals within Wales to take part in the new advisory group, including Learning Disability Wales, Mencap Cymru, All Wales People First and All Wales Forum of Parents and Carers. Other members include health professionals and representatives of the Association of Directors of Social Services.
CoP Update
The new group is much smaller than the previous advisory group with just 12 members including the two new co-Chairs: Dr Roger Banks, consultant psychiatrist with Betsi Cadwaladr University Health Board, and Sophie Hinksman, vice-chair of All Wales People First. The Learning Disability Advisory Group will help the Welsh Government shape its learning disability policy on issues such as sustainable social services, tackling health inequalities, social integration and inclusion. This initial meeting focused on agreeing the Terms of Reference and proposed workstreams for the group. One of the areas that the Information Officer Samantha Williams and the co-Chairs will be working on over the coming months is the development of a Communication Strategy for the new advisory group to ensure that people with a learning disability in Wales and their families are aware of the group’s work and are able to fully engage with it.
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LDIAG News
CB CoP Update The Challenging Behaviour Community of Practice (CB CoP) met in Newtown on 20 June with a very full and interesting agenda.
Intensive Support Packages Clare Trudgeon (Clinical Psychologist) and Sara Bassett (Intensive Support Worker) from Aneurin Bevan Health Board gave a presentation on developing intensive support packages (ISPs) for people with severe challenging behaviour. They both work as part of a team delivering specialist services to a small number of people who meet full continuing healthcare criteria and whose support needs around day activities and respite could not be met by local mainstream learning disability services. “To catch the reader's attention, place an interesting sentence or quote from the story here.”
The team differs from usual behaviour teams in that it provides medium to long term, intensive, hands-on therapeutic input and care to individuals via Specialist Support Workers who carry out the service under professional guidance. It is a very person-centred approach with a therapeutic focus e.g. life skills, community presence, reducing challenging behaviour etc. Care co-ordinators, along with Psychology, Occupational Therapy and support from heads of profession and management all helped to develop the service model. Detailed baseline assessments were undertaken by Community Learning Disability Teams e.g. functional analysis, sensory profiles etc. Workshops were held with families in order to identify needs and service provision. The team liaised with local education and day services
to discuss options for bespoke activities within these settings. All staff are trained in Positive Behavioural Support (PBS) and Specialist Support Workers have office time as well as hands-on sessions to enable them to keep detailed records. Data is analysed and outcome measures reviewed on a regular basis. The presentation included a number of examples of specific ISPs and the outcomes for those individuals such as independent feeding skills, reduction in use of protective clothing, increased communication skills and, for two service users, a transfer back to mainstream learning disability services. Feedback from families has also been very positive, despite some initial concerns and misapprehensions.
Touch Trust Next on the agenda was a presentation by Dilys Price on the work of the Touch Trust, including video clips of “Communicating Through Touch” sessions specifically designed for people with complex needs including challenging behaviour. Dilys talked about the basic human need to express oneself and be appreciated for that expression. She then went on to outline some of the training available for staff and (Continued on page 3)
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individuals as well as details of the Touch Trust College of the Arts for young adults aged 19 to 25, based at the Wales Millennium Centre in Cardiff Bay. Further details can be found on the website www.touchtrust.co.uk.
Applied Behaviour Analysis Therapy—a mother’s view Parent Maria Leahy then talked passionately about Applied Behaviour Analysis Therapy and how it had saved her child from “drowning in autism”. She showed some amazing video clips of her son before, during and after the therapy and the effects were truly incredible. Maria described the therapy as her son’s “salvation” and it was a truly inspirational story.
Post-Winterbourne View — what now? After lunch Professor Eric Emerson, Co -Director of Improving Health and Lives: Learning Disabilities Observatory, gave a presentation on the opportunities for change following the post-Winterbourne reviews. His presentation was very timely as it was just before the Care Quality Commission (CQC), Department of Health and Improving Health and Lives Learning Disabilities Observatory all published reports relating to the issues highlighted by the Winterbourne View scandal.
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with almost 50% (69) of the hospitals and care homes inspected not meeting government standards, and safeguarding concerns identified in nearly 20% (27). In the same week the Department of Health published its interim report on post-Winterbourne View developments. The main findings of the report were as follows:
There are too many people in inpatient services for assessment and treatment and they are staying there for too long. This model of care has no place in the 21st century.
Best practice is for people to have access to the support and services they need locally to enable them to live fulfilling lives integrated within the community.
“To catch the reader's attention, place an interesting sentence or quote from the story here.”
In too many services there is robust evidence of poor quality of care, poor care planning, lack of meaningful activities to do in the day, and too much reliance on restraining people.
All parts of the system – commissioners, providers, workforce, regulators and government – must play their part in driving up standards of care and demonstrating zero tolerance of abuse. This includes acting immediately where poor practice or sub-standard care is suspected. The report also identified a number of key objectives and “clear actions at a national level to support local improvement to ensure delivery of these objectives”.
The week after the CoP meeting, the CQC published its National Overview report of the inspection of 150 assessment and treatment units for people with learning Coinciding with these reports, disabilities. The report Improving Health and Lives: highlighted significant failings Prof Eric Emerson (Continued on page 4)
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LDIAG News
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Learning Disabilities Observatory launched their own review of the results of the 2011/12 CQC inspection of learning disability services. The report indicates:
Only 1 in 7 of the current residents of these units were being supported in settings that were fully compliant with key regulations. An unacceptable number of patients with learning disabilities were resident in assessment and treatment units for very long periods of time.
catch the reader's attention, “ToFor every comparison
made, units operated by NHS Trusts were more likely to be compliant than services operated by independent (primarily for profit) healthcare providers.
place an interesting sentence or quote from the story here.”
Prof Emerson’s presentation focused on what lessons had been learnt so far from research and practice, and how best to capitalise on the opportunities for change that these reviews will undoubtedly create. Lesson 1 originally came from Prof Ian Mansell back in the 1990s and that is the simple fact that nobody with learning disabilities and challenging behaviour needs institutional-style services. Despite this, many organisations (NHS Trusts and independent healthcare providers) have continued to develop this type of service and others are looking at moving into this market. Crucially, many organisations (including NHS Trusts and Local Authorities in both England and Wales) continue to place people with learning disabilities in these services. So the big question is why? The answer is generally because of a lack of appropriate local services.
All too often people are placed in these institutional-style settings because there is simply no suitable alternative in their local area or because the services that do exist are ‘unable to cope’. Money is also a factor with local authorities having to make drastic cuts to their budgets and having to look for the cheapest service packages available. However, studies have shown that developing good quality local services can in fact save money in the long term as it leads to better outcomes for individuals and avoids people being sent to expensive out-of-county placements. The 2nd lesson is that very few (if any) people with learning disabilities and severe challenging behaviour would chose to live with (or gain any benefit from living with) other people who show severe challenging behaviour. However, many organisations have developed services that involve congregating people with severe challenging behaviour and many organisations continue to place people in these services. Why? Because it is seen as being the cheapest and most convenient way of developing a specialist service plus it is often deemed to be ‘safer’. In fact, research shows that people often demonstrate a decrease in challenging behaviours when living with others who do not (Continued on page 5)
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have challenging behaviour than when congregated with those who do. The key is receiving appropriate support from trained staff in a calm, predictable, consistent and safe environment. Lesson 3 is that even the most severe challenging behaviour is often adaptive and functional. This means that there are often underlying reasons for the behaviour and therefore changing the conditions in which people live can result in a decrease in the behaviours that challenge. Challenging behaviour is often a reflection of the inequalities in power that people experience in their daily lives and the focus should be on ‘fixing’ the conditions in which people live, giving people more choice and control over their lives, rather than trying to ‘fix’ the behaviour. So, why is so much money invested in out-ofarea assessment and treatment services? The 4th and final lesson is that severe challenging behaviour often begins in early childhood and it is therefore, according to Prof Emerson, “an inexcusable waste of lives and money not to invest in effective prevention and early intervention”. The presentation concluded with a number of suggestions for what to do next in order to make a difference and prevent more people being abused in institutions like Winterbourne View. Prof Emerson suggested that we need better evidence in the form of case studies, examples and real-life stories to support progressive advocacy. He also felt that we need a different type of evidence to support progressive
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policy and get the likes of the Treasury to listen to us. This evidence would need to focus on effectiveness and efficiency, and demonstrate clearly that what we do on the ground makes a real difference to people’s lives and therefore saves money in the medium to long term. Emerson signed off by saying that we all need to keep reiterating what we know until somebody decides to listen and that “to be silent is to condone the status quo”.
Sensory Processing The final presentation was delivered by Dee-Arn Holzl, Senior Occupational Therapist in Merthyr Tydfil, on the subject of sensory integration/ processing and its links to behaviour. Sensory integration is a means of analysing and understanding behaviours and evaluating sensory processing disorders that affect functional performance and the ability to learn new skills. Dee-Arn provided a brief overview of sensory integration including some of the terminology and research before talking about her own work as a trained Sensory Integration Therapist. Treatment sessions are one -to-one and meet specific criteria: multiple sensory experiences, novelty in environment, active engagement in challenging, sensory and motor tasks. In her experience, the link between sensory issues and behaviour is very strong with enduring sensory problems leading to the development of behaviours in order to cope with them, for example, behaviours that seek intense sensation to block out discomfort. The presentation went on to give further details of the sort of therapeutic interventions available including “sensory diets”. “To catch the reader's attention, place an interesting sentence or quote from the story here.”
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LDIAG News
Inspirational Stories at the Real Opportunities Conference On 3 July the Real Opportunities project held its first annual conference at the Future Inn, Cardiff Bay. Over 100 delegates from a variety of sectors attended the conference along with staff and young people from the project. During the course of the day representatives from education, employment, research and Welsh Government discussed the work of the project and how it fitted within their respective sectors. However, the real stars on the day were the young people who delivered presentations and totally stole the show by sharing their inspirational stories.
Direct support is given to young people based on 5 pathways in the transition to adulthood, encompassing different areas of life, including: lifelong learning, independent living, leisure opportunities, relationships and employment. This is achieved by means of the following interventions:
“To catch the reader's attention, place an interesting sentence or quote from the story here.”
The conference began with some history and background from Angela Kenvyn, Project Manager, who has been involved in the project since its inception several years ago. Real Opportunities works with young people aged 14-19 with a learning disability, severe and complex needs or an autistic spectrum disorder (ASD) to help them become as independent as possible in their adult lives. The project works closely with young people, their families and professionals to develop a transition plan that is totally centred on the young person. The project has ‘Hub Teams’ in 9 local authorities: Caerphilly, Bridgend, Carmarthenshire, Rhondda Cynon Taf, Neath Port Talbot, Swansea, Merthyr, Pembrokeshire and Torfaen. Project staff help young people, their families and other professionals to achieve the goals set out in the plan by providing training, activities, opportunities and support.
Transition planning Person centred planning and family liaison Work preparation and employment support (provided by Elite, Remploy, NAS and Mencap) Skills for living independently Youth inclusion and peer mentor development Psychological support and behaviour management.
Young people are also indirectly supported by the training and recruitment of Peer Mentors. Each Real Opportunities team has a Peer Mentor Coordinator who trains colleagues and peers within the young person's life to be able to support him/her in a more natural setting, promoting greater integration into the workplace and community, and providing support in a more personal and preferred way. The project is also seeking to improve and develop methods of best practice across Wales for supporting young people with Special Educational Needs through transition. The Welsh Centre for Learning Disabilities (WCLD) has been contracted to deliver research and evaluation services in order to evaluate the success of the (Continued on page 7)
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interventions and project methodology and to disseminate best practice as widely as possible. Steve Beyer from WCLD spoke about the research at the conference and explained that it would include a comparison of outcomes between the young people involved in Real Opportunities and those leaving school without having been involved in the project. The research is also seeking the views of staff, families and the young people themselves through surveys, focus groups and interviews. The aim is to provide analysis of the methods used within the project and clear evidence of the effectiveness of these methods in order to inform the future development of transition and post-16 services in Wales. Steve pointed out that one of the main problems with person-centred planning, according to those involved in the project, was often the lack of suitable options available to enable young people to achieve their goals. Ian Elliot is currently the Head of Penmaes Special School in Brecon, Powys but in September this year he will take on the role of Principal at Trinity Fields School in Caerphilly. He
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spoke at the conference of his admiration for the determination and resilience of the young people he has worked with over the years. He also talked about the difference Real Opportunities is making to the lives of young people and the fact that it is not about professionals leading the way but rather working in partnership with young people, listening to them and helping them to achieve their goals. The project is based on collaboration and partnership with a focus on the importance of understanding each individual’s needs and making sure they can be met. He added that the project also highlights the importance of young people being full partners in the process. Ian finished his presentation with a quote from the song ‘Something Inside So Strong’ which he felt summed up the attitudes of the young people he has met over the years: “The higher you build your barriers, the taller I become”. “To catch the reader's attention, place an interesting sentence or quote from the story here.”
There were presentations from Welsh Government representatives Chris Burdett and Alun Davies AM on how the Real Opportunities project fits in with statutory reform, the key role of person centred planning in transition, (Continued on page 8)
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LDIAG News
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and European funding. After lunch Kyle Fox, a young person from Caerphilly, entertained us all with his singing and Matthew Devinett from Rhondda Cynon Taf did the haka! Marcus Probert’s truly inspirational story about how the project had changed his life was illustrated beautifully by the Torfaen hub team’s video presentation and reinforced by the words of his mother Andrea. The Real Opportunities brand new website was also launched at the conference: www.realopportunities.org.uk (English) or www.cyfleoeddgwirioneddol.org.uk (Welsh). The site is divided into three main sections, each one tailored to meet the needs of specific user groups: young people, parents
and professionals. As well as information about the project, there are lots of useful resources on the website including the project toolkit. The toolkit contains forms, guidance and tools used throughout the project to support young people with person centred planning and transition work, youth inclusion, independent living skills and psychology support. Please contact Laura Davies on 01639 635650 or e-mail laura.davies@learningdisabilitywales.o rg.uk for a username and password to access the online resources. The toolkit is still under development but you will be able to access the tools as and when they are updated and uploaded. You can also find out more about the project and get involved on Facebook (RealOpportunitiesProject) and Twitter (@Real_Opps).
Key to Your Home Unlocking information about where you live and how you live
Learning Disability Wales Annual Conference 2012 Tuesday 13 and Wednesday 14 November 2012 Newport, South Wales This year our annual conference will be focusing on the theme of accommodation for people with a learning disability. On day 1 we will be looking at where you live, the roof over your head and some of the options available. On day 2 we will be looking at how you live including personalised technology, safety in the home and ways to participate in the community. Both days will also have a variety of interactive and informative workshops. For more information or to book your place please contact Harriett by email: harriett.johnson@learningdisabilitywales.org.uk or phone: 029 2068 1160.
For more information or to let us know what you think, contact Sam Williams on 029 20681160 or via e-mail: samantha.williams@learningdisabilitywales.org.uk