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Inside this issue:

CoP Update 2

Report on first

Real Opportunities

annual conference

6

Event: Learning

Disability Wales

annual conference

2012

8

New Advisory Group Meets for

First Time

Summer 2012

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.

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.

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.

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.

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.

www.ldiag.org.uk

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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.

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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Page 3 Summer 2012

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.

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

disabilities. The report highlighted significant failings

(Continued from page 2) 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 in-

patient 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.

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”.

Coinciding with these reports, Improving Health and Lives:

(Continued on page 4) Prof Eric Emerson

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Page 4 LDIAG News

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.

For every comparison made, units operated by NHS Trusts were more

likely to be compliant than services operated by independent (primarily

for profit) healthcare providers.

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.

(Continued from page 3)

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

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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-of-area 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

(Continued from page 4) 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”.

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Page 6 LDIAG News

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.

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.

Direct support is given to young

people based on 5 pathways in the transition to adulthood, encompassing

different areas of life, including: life-long learning, independent living,

leisure opportunities, relationships and employment. This is achieved by

means of the following interventions:

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)

Inspirational Stories at the Real

Opportunities Conference

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Page 7 Summer 2012

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

(Continued from page 6) 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”.

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)

Page 8 LDIAG News

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

(Continued from page 7) 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).

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

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.

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