The Path to Better Outcomes - Challenging Behaviour Foundation

Challenge
Summer 2015
THE NEWSLETTER OF THE CHALLENGING BEHAVIOUR FOUNDATION
The Path to Better Outcomes
PAGE 4/5
Good services
NICE guidelines, case studies
of good services, and accessing
support
PAGE 6
Understanding challenging
behaviour
A summary of the CBF’s
information on understanding
challenging behaviour and
positive behaviour support
PAGE 7
Advocacy
Medway Advocacy Project
evaluation, and a family
carer perspective
PAGE 8
Your questions to the email
network
Advice from family carers about
good support for someone with
severe learning disabilities and
behaviour that challenges
PAGE 10
Get involved!
Recent fundraising events, and
our new Facebook fundraising
page.
‘Challenge’ is the newsletter of the
Challenging Behaviour Foundation,
supporting those caring for
individuals with severe learning
disabilities whose behaviour is
described as challenging
Dr Edwin Jones talks about how
commissioning in Wales has led to
better outcomes
‘Closer to Home’ (C2H) is a collaboration
between Health, Local Authority Social
Services, and the third sector in South
Wales. It has successfully provided
people with learning disabilities and
behaviours that challenge with their
own homes and assisted providers
to implement Positive Behavioural
Support (PBS).
Supported Living
‘Ordinary’ houses are provided and
adapted by registered social landlords.
Supported living means that people
have security, and the houses are
personalised and homely. The houses
are in people’s own communities, with
easy access to many activities.
Supported living is more cost-effective
compared to ‘residential placement’.
Commissioners informally pool budgets
and carefully plan staffing with support
providers and families so that revenue
funding can be used more effectively.
Social services care management
teams and health counterparts regularly
review and strategically plan for
individuals.
Positive Behaviour Support (PBS)
Whilst ordinary housing in the right
location provides the best foundation
for service quality, how staff support
people is crucial. C2H providers are
required to implement PBS, and
demonstrate a commitment to enhancing
staff skills by enabling them to gain
PBS qualifications. Staff use Active
Support as a core ‘PBS primary
prevention’ strategy. People participate
in the typical activities of daily life such
as shopping, cooking, community
leisure and employment opportunities
etc.
which range from going on a first date,
using public transport, to maintaining
eye contact for more than a few
seconds. So far, the C2H collaboration
has successfully provided 24 tenancies,
with even more in development or
planned.
‘Bryn’ used to live a very sedentary,
almost nocturnal life in a residential
home, where he was very anxious
and agitated. There were mounting
concerns regarding the way he was
supported and the increase in his
hyperventilation, destructive and
disruptive behaviours. In his new
C2H home, staff supported him to
communicate more effectively,
participate in a much greater range
of activities, develop a consistent
sleep pattern and establish his
own self-help routines. Skilled,
consistent support made things
more predictable, reducing Bryn’s
anxiety.
This is an extract. To view the full article,
go to www.bit.ly/closer2home
Dr Edwin Jones
Service Development Consultant
Directorate of Learning Disabilities
Impact of ‘Closer to Home’
There are countless examples of small
but significant personal achievements,
www.challengingbehaviour.org.uk
COMMENT
Your Comments
Getting Better
We asked on Facebook, ‘What is good
support? How would you describe ‘best
practice’?’
learning useful signs, such as “finish”,
and learning new practical skills such as
waiting).
“I would say best practise is looking
at the individual person, or the
challenging issues, with multiple
agencies so the best outcomes can
be reached.” (Michelle)
“Benevolence, empathy, skill,
tolerance, respect, dependability
and humour are my top choices. I
think there are some things you
can't teach people and in my
experience most of my admired
qualities seem to come naturally to
someone who is good at this very
difficult job.
To make the best of everyone's
talents though staff need really
good support by their team. No
one working in isolation can hope
to give off their best without being
supported themselves.” (Ian)
"This photo is excellent evidence of
good support (see below)! It is of
Jacob at a theme park with his
support workers." (Wendy)
Thank you for all of your fantastic
comments!
If you’d like to feature in this column
we’d love to hear from you! Look out
for our posts on
facebook.com/thecbf and
@cbfdn,
or send your comments to
communications@thecbf.org.uk
2 Challenge Summer 2015
Vivien Cooper
Twenty years ago, my son went to a 52
week residential school because there
was no local support or service that could
meet his needs. Nine years living with his
family and attending a local special
school had built him a reputation for
being extremely difficult to manage, a
child with a range of behaviours including
disruptive and destructive behaviours,
self-injurious behaviours and behaviours
such as hair pulling, biting and pinching.
We were told that very few children
displayed such behaviours, that his
needs were exceptional and that we
were unrealistic to expect that local
support and services could cater for
them. Families are still being told this.
In the out-of-area specialist 52 week
school I was surprised to find that, in
contrast to what we had been led to
believe, there was in fact a great deal
known about challenging behaviour.
Instead of viewing the problem as being
located within the person, there was a lot
of evidence about why the behaviour
occurred – and more importantly, what
could be done to reduce it. This included
working out what purpose the behaviour
served for the person (what it “got” them,
for example being removed from a noisy
room, or getting attention or a favourite
possession) as well as teaching the
person new skills and alternative ways to
get their needs met (for example, being
taught how to communicate through
It brought home to me very clearly that
the knowledge in itself was not enough –
it had to get to all the people who needed
to know it, so that it could be used. Over
the years, significant funding has gone
into research that has resulted in a body
of knowledge about supporting children
and adults who display challenging
behaviour – but much of it has
been shared in journals and papers,
mainly read by other researchers! The
information needs to be translated into
practical terms – “so what does this
mean for people’s everyday lives, and
how can we make sure that we use it and
get it to everyone who will benefit?”
There must be a commitment to actively
share it – it is the practical application of
the information that changes lives,
and that is where there is a need for
improvement.
We need to make it much easier for
everyone (families, people with learning
disabilities, commissioners, providers
and practitioners) to know what to do and
how to do it. And that means providing a
range of practical information in a range
of formats, for a range of stakeholders.
This edition of Challenge focusses on
sharing and implementing best practice.
There is general agreement that the
current national learning disability policy,
based on rights, independence, choice
and inclusion, says the right things. But
that policy must be translated into
practice – and the current gap between
policy and practice is too great. Guidance
is an important start, but it is the practical
implementation of it that will transform
lives and really make a difference.
Vivien Cooper OBE
Chief Executive and Founder of the
Challenging Behaviour Foundation
CHALLENGING BEHAVIOUR FOUNDATION
YOUR STORIES
ALL ABOUT THE CBF
Best Practice:
What does good support look like?
Expert by Experience:
Glenice Lake
To coordinate with the publication of our Early Intervention Project’s new resource,
‘Paving the Way’, our latest newsletter is on the theme of best practice and good
support. ‘Paving the Way’ has been sent to commissioners and Heads of Service, and
outlines a ‘pathway to good support’ with examples of successful services – you can
read more on page 4. On the front page and page 5, Drs Edwin Jones and Freddy
Jackson Brown outline services that they are part of, which are dedicated to delivering
the right support, in the right place, at the right time.
Advocacy plays an important role in ensuring that someone with severe learning
disabilities who displays behaviour that challenges gets the support they need. Another
of our projects which has delivered positive outcomes recently is the Medway Advocacy
Project. An independent evaluation has just been carried out for the project, and you
can read a summary on page 7. On the same page Balwinder, a family carer, tells us
about her experiences of advocating for her daughter, Mindy, with the CBF’s support.
The CBF has produced information sheets on good support and advocacy. We also have
guides specifically about behaviour, which are useful for family members and staff who
care for someone with severe learning disabilities who displays behaviour that
challenges on a day-to-day basis. Go to page 6 for a summary of our information sheets
on understanding behaviour and supporting behaviour change. You can find out how to
access challenging behaviour support on page 6.
Support can come from different sources, and sometimes the support needed comes
from our peers. We have set up peer support networks for families caring for someone
with severe learning disabilities who displays challenging behaviour – the Family Carers’
Email Network and the Family Linking Scheme. Find out more in our ‘Spotlight On…’
column on page 8!
About Us
We are the charity for people with severe learning disabilities who display challenging
behaviour and those who support them. We make a difference to the lives of children
and adults across the UK through:
Information
Supporting You
Workshops
Driving Change
Our vision is for all people with severe learning disabilities who display challenging
behaviour to have the same life opportunities as everyone else and, with the right
support, to live full and active lives in their community.
Our mission is to improve understanding of challenging behaviour, empower
families with information and support, and help others to provide better services
and more opportunities to people with severe learning disabilities who display
challenging behaviour.
To access our information and support, or find out more about what we
do, call 01634 838739, email info@thecbf.org.uk, or visit our website:
www.challengingbehaviour.org.uk
CHALLENGING BEHAVIOUR FOUNDATION
We recruited Glenice Lake as an ExE
in 2014; she has now been on nine
inspection teams. Glenice’s two
youngest sons have severe learning
disabilities and autism. Her sons’
care manager sees their supported
living arrangements as a model of
excellence, which she would like to roll
out across the borough.
Glenice has been asked to help CQC
develop the inspection methodology
for services for people with supported
living arrangements. This is a pressing
matter for the CQC as so many more
people are opting for supported living
rather than moving into care homes.
Glenice says: “The shock of [Daniel and
David] moving to their own homes has
worn off now. They’re so happy. Their
speech has really developed and what
touches my heart the most is that they
go out at night to the park across the
road and lie in the cargo nets there and
just watch the stars. They have a big
garden, which they spend lots of time
in; gardening’s their passion. We’re
setting up a mini social enterprise for
them to grow their organic produce
and sell eggs from the chickens they
keep.
“The years of struggle, fighting and
tears have definitely been worth it to
get the right providers and to see them
fly, and now I am far more relaxed. It’s
given me such peace of mind I can
now sleep through the night for the
first time in years without waking up
worrying about them. I’m also having a
great time with my ExE work; it’s met
the empty nest gap in my heart left by
my boys moving out.”
Challenge 2015 Summer 3
PROVIDING AND ACCESSING GOOD SERVICES FOR PEOPLE WITH
NICE Guidelines
The latest NICE guidelines on learning
disability and behaviour that challenges
have just been published, and there is
a specific guide written for families and
carers. To read the guidelines in full, go
to www.nice.org.uk/guidance/ng11.
Paving the Way:
How to develop effective local services for children with
learning disabilities and behaviour that challenges
3. Provide evidence-based parenting
programmes (Stepping Stones, Brighton
and Hove)
4. Establish a local positive behavioural
support services (Bristol Positive
Behavioural Support Service)
Information and support: People with
a learning disability should be
encouraged to be as independent as
possible. Both you and the person you
care for should be given information
about
learning
disabilities
and
behaviour that challenges, and the care
and support available. This includes
personal and practical help for the
strain of caring.
Understanding behaviour: Everybody
providing care and support should
understand what causes behaviour that
challenges, and that this behaviour is a
way for people to show that they need
something.
Assessing behaviour: Initial behaviour
assessments should be provided for
everyone, and then continuing
assessments should be carried out as
needed.
Behaviour support plan: Steps
required to support behaviour change
and improve quality of life should be
agreed as soon as possible and
reviewed regularly.
Help for behaviour that challenges:
This could include ‘parent-training
classes’, classroom-based support, or
skills training for people with learning
disabilities, depending on the situation.
Medication should only be prescribed
if there is a clear reason and system for
review. Restrictive intervention is a last
resort, only to be used if there is
immediate danger of harm to
themselves or others, and together
with other methods of support.
5. Develop a local approach to crisis
prevention (Ealing Intensive Therapeutic
Short Break Service)
The Early Intervention Project is pleased
to announce the publication of a new,
free resource for commissioners and
Heads of Service across education,
health and social care. ‘Paving the Way’
describes how to develop effective local
services for children with learning
disabilities and behaviours described as
challenging. It includes examples of good
practice, outcomes, costings, and advice
on how to develop evidence-based local
services. The resource has been sent to
Clinical Commissioning Groups (CCGs)
and Special Educational Needs (SEN)
schools, and we hope that it will provide
them with the tools to make a real
improvement to outcomes for children in
their local area.
We
worked
with
children
and
young people, families, professionals,
commissioners and academic experts to
identify the key features of good local
behaviour support for children (a ‘path to
better outcomes’), and case studies
which illustrate each of these features:
1. Establish a person-centred approach,
right from the start (Wolverhampton
Special Needs Early Years Service)
We know that effective early intervention
can reduce the severity and frequency of
challenging behaviour, improve quality of
life, and also avoid the high costs of crisis
intervention. This new resource is
particularly timely with the release of
other papers:
• The Department of Health Green
Paper ‘No voice unheard: no
right ignored’ states that early
intervention should be routine
• The NICE guidelines on learning
disability and challenging behaviour
will set the benchmark for
evidence-based support
• The SEND reforms provide
additional opportunities for a
holistic approach to support and
services to meet the needs of this
group of children and young
people
We want ‘Paving the Way’ to be shared
far and wide, to spread the message that
it is possible to commission and provide
good local support and services for
children with learning disabilities and
behaviours that challenge – and it is cost
effective to do so!
To read 'Paving the Way', go to
www.bit.ly/eippavingtheway
2. Identify and respond to problems
rapidly (Coventry and Warwickshire
Community Learning Disability Team)
Help for health problems: People with
learning disabilities and behaviour that
challenges should be given a health
check yearly by their GP.
4 Challenge Summer 2015
CHALLENGING BEHAVIOUR FOUNDATION
H LEARNING DISABILITIES AND BEHAVIOUR THAT CHALLENGES
Bristol Positive Behaviour Support Service (PBSS)
Bristol PBSS was used as a case study
for ‘Paving the Way’, as an example of
an excellent local service for children
with learning disabilities and behaviour
that challenges. Freddy Jackson
Brown, a clinical psychologist in the
service, tells us why it works.
• Long-term planning – successful
because
our
commissioners
understand the need to plan years
in advance
Promoting good practice nationally is
critical, as is ensuring suggestions for
improvement are taken on and
faithfully delivered. One way to support
good practice more widely is to
evaluate service efficacy against clear
outcomes targets, e.g. using tools that
show positive behaviour change and
quality of life.
The Bristol Positive Behaviour Support
Service (PBSS) delivers individually
tailored therapeutic programmes to
learning disabled children whose
challenging behaviour placed them at Aaron during a therapy session
risk of school exclusion and out of authority placement. For
the last 10 years the Bristol PBSS has worked to support
children and their family’s wellbeing and quality of life. The
“I feel passionately about giving our kids the same life
service has not only successfully kept most children in their
opportunities as other children. This is a political and
local schools, but has saved £1.8 million in the last 4 years
social justice issue about making sure there is a place for
alone.
everyone in our society. I am immensely proud of the
team I manage who work hard and creatively every day
In order to deliver high quality services, we have found that
as they seek to help children learn new skills and have a
the key to success depends on a number of interlocking
better quality of life. I feel angry about the lack of specialist
elements:
provision available for our families, who often have to
• Good working relationships – with children and their
struggle on alone, battling for even basic support and
families, and other professionals and agencies
care. We are a wealthy enough society to be able to provide
• Clear functional principles – understanding the
more for our most needy kids.” Freddy Jackson Brown
principles behind PBS, rather than just a series of
techniques, allows us to problem-solve when things
Freddy Jackson Brown
aren’t working
Clinical Psychology
Bristol Positive Behaviour Support Service
FAQ: ‘I’ve been told that no-one can help me with
my daughter’s behaviour, what can I do?’
The full version is online here: www.bit.ly/1B7GLdJ, where you can find links to further information and a template letter to
write to your Clinical Commissioning Group (CCG).
You shouldn’t have to manage on your own - families have a right to support. It’s known that there are effective ways to change
behaviour and that it’s best to start as early as possible. Services vary from area to area and it can take a really long time to get
any help, which is frustrating for families. To access help you could:
Use NHS Services
• If your daughter is under 18, the local Child and Adolescent Mental Health Service (CAMHS) are the NHS service
that helps children and young people with emotional, behavioural or mental health problems. The service may have a
range of professionals who can assess your daughter and offer some support or intervention.
• If your daughter is over 18, there will be an Adult Community Learning Disability Team or Adult Mental Health Service
that she can be referred to.
Some areas have a local behaviour team dedicated to supporting people with learning disabilities. If you’ve been to the local
mental health service or learning disability team and they have done all they can, ask them to refer to a specialist service for
further help. There are specialist national services at the South London and Maudsley Hospital.
Find specialist help
If you find there is no local or national support available, ask if the school, care provider or respite service has access to a
behaviour specialist. The CBF have a list of independent behaviour consultants available on request that they could use to ‘buy
in’ the specialist help. Some people may be able to choose to use behaviour consultants privately and pay for the service themselves.
Ask for the service you need
Where an area has nothing available, people can ask the NHS to fund the health services they need. Write a letter to the Clinical
Commissioning Group (CCG) to request a specialist in functional assessment to be made available as part of the local offer.
CHALLENGING BEHAVIOUR FOUNDATION
Challenge 2015 Summer 5
GOOD SUPPORT: POSITIVE BEHAV
Supporting Behaviour Change
Challenging behaviour includes self-injury, hurting others, destruction, eating inedible objects, and things like running away or
stripping. People with severe learning disabilities are more likely to show challenging behaviour, especially because of health
problems, communication difficulties, environmental change, or needs not being met.
“
Peter McGill
The Tizard Centre
Most 2-year olds develop a range of communication and social skills which enable them
to get what they want and need more easily. Many children with learning disabilities do
not develop these skills and are left with the same needs as other children, but are much
less able to get them met.
FUNCTIONS OF CHALLENGING BEHAVIOUR
SOCIAL
ATTENTION
SENSORY
GETTING
THINGS
”
ESCAPE
POSITIVE BEHAVIOUR SUPPORT (PBS)
A Behaviour Support Plan makes it easier to identify
arousal level and use proactive and reactive
strategies (see below) to keep the individual happy.
3.
Incident
PBS teaches more effective and acceptable
behaviours to get needs met, so challenging
behaviour is reduced.
2.
Anxious
Arousal
level
4.
Calming
down
1. PROACTIVE:
Support to stay happy
2. ACTIVE:
Swiftly reducing anxiety
3. REACTIVE:
Preventing harm
1.
Happy
4. POST-REACTIVE:
Calming, being careful
We have produced the information sheets: Understanding Challenging Behaviour: Part 1', 'Finding the Causes of Challenging
Behaviour: Part 2' and 'Positive Behaviour Support: Part 3. These are free to download from our website
(Go to www.challengingbehaviour.org.uk > Information > Information Sheets and DVDs > About Challenging Behaviour).
You can also use the resource order form on the back of this newsletter, or contact us on 01634 88739 or info@thecbf.org.uk.
6 Challenge Summer 2015
CHALLENGING BEHAVIOUR FOUNDATION
VIOUR SUPPORT AND ADVOCACY
Medway Advocacy Project (MAP)
Medway Advocacy Project (MAP) was a project run by The Challenging Behaviour Foundation and The Tizard Centre in Kent. We
employed an independent evaluator to interview people involved in the project and tell us how we have done. Here is a summary – the
full report will be on our website soon.
6
3
Individuals with severe learning disabilities involved in the project.
The people who received advocacy lived in care services in Kent. MAP tested a person-centred, dual-model (one
independent and one family member) of non-instructed advocacy to give the individuals an independent voice.
Objectives:
1) To train and support the advocates to advocate for the individuals; 2) To trial the model, 3) To share the results
of the pilot and develop a resource for advocacy organisations.
Successes
Challenges
•Evidence of the benefits of long-term, consistent,
person-centred advocacy for individuals with severe learning
disabilities and complex needs.
•Valued supervision for advocates, showing the importance
of ongoing support and guidance.
•Advocates acquired transferable skills and abilities.
•Development of a well-received training programme
•Some success in including family advocates.
•Recruiting and retaining advocates.
•Complex relationships with service providers and local
authority.
•The project was difficult to manage; as a pilot, much was
unknown, and steering group members had to invest a lot of
time.
•Challenges in creating and maintaining relationship with
family/friend advocates.
“Looking back it doesn’t look like a lot of changes were made, but I think [the advocates] did make a big difference. It can
be the little things that make a big difference to people with a learning disability” Steering Group member
Advocating for Mindy
manager at the home and we had endless meetings to
discuss things but nothing was being done. We didn’t know
what to do as there were so many issues but no was listening
to us.
The relationship with the home was starting to deteriorate so
I turned to CBF support workers. They were fantastic, they
had hours to listen to my concerns and they helped me to
draft my letters and understand jargon. We discussed DoLS,
safeguarding issues, and what approach to take in meetings.
Eventually, after about three years, Mindy was moved to a
residential home in the borough, which is only a 5 minute
drive from my home.
Mindy and her sisters on holiday
My daughter Mindy is 26 years old. She is a very affectionate,
bright, sociable, energetic young lady who loves going out
and being with people. Her diagnoses are epilepsy and severe
learning disabilities. At times her behaviours can be very
challenging, the main one being eating cigarette butts.
After spending some time in a new residential placement,
things started to deteriorate for Mindy, and she became
extremely challenging every time we dropped her back. At the
same time, Mindy’s best friend’s mother decided to remove
her son suddenly and kept him at home.
Mindy was emotionally very distressed and upset but I couldn’t
keep Mindy home as both my husband and I were working.
She couldn’t communicate with us but it was clear that she
was terrified of going back to the residential placement after
every weekend she spent home. I spoke to Mindy’s care
I decided to become a volunteer for the CBF as I could not
put a monetary value on the tremendous support that I
received from them. I want to support other parents who
might be going through what I went through because I know
how hard it is to find someone who understands. I support
the CBF by manning information stalls at events and
conferences. I deliver workshops as a family carer and I give
talks to family carers and psychology students. I have also
attended advisory group meetings and have become a Family
Link volunteer too.
Balwinder Sandhu
Family carer, co-trainer and CBF volunteer
CHALLENGING BEHAVIOUR FOUNDATION
Challenge 2015 Summer 7
SPOTLIGHT ON...
Peer-to-Peer
Support
Family carers often tell us that they
feel isolated and alone because of
their caring responsibilities. So, we
offer two systems of peer support to
enable families caring for people with
severe learning disabilities and
behaviour that challenges to talk to
each other: the Family Carers’ Email
Network and the Family Linking
Scheme.
The Family Carers’ Email Network is
a place for family carers to ask
questions, and share advice and
experiences with others who are in
similar positions. Questions and
answers
are
moderated
and
anonymised when they come into the
CBF office, so family carers can feel
comfortable asking advice on any issue
they like. We’ve had questions about
challenging behaviour, iPad apps,
strong furniture, becoming a Deputy,
renovating your house…the possibilities
are endless!
“We are like an extended family. We
genuinely empathise with each other.”
The Family Linking Scheme brings
together family carers who have ‘been
there’ and are able to provide a listening
ear, information and ideas. We try to
match family carers with a Link
Volunteer who is in, or has been in, a
similar situation – we have recruited
volunteers with a variety of experiences
so we can find someone who
understands what you are going
through. Our Link volunteers are
trained to give emotional support, and
can keep in touch by telephone and
email at times that suit you.
“I definitely feel less isolated. You don’t
know people like that exist – with a
wealth of information relevant to your
situation.”
For more information on the Email Network
or Linking Scheme, go to our website:
www.challengingbehaviour.org.uk
>Supporting You > For Families. You can
email us to be sent an application form:
network@thecbf.org.uk to join the Email
Network and volunteering@thecbf.org.uk
to join the Linking Scheme.
8 Challenge Summer 2015
YOUR QUESTIONS FROM THE EMAIL NETWORK
Q
: Is it true that a child
with severe autism who
is non-verbal and self-injures cannot be tested to see
what age they function at?
A1: No – my son is non-verbal and
self-injures and was tested a couple
of years ago.
A2: No it is not true, cognitive tests
can be carried out, however as in the
case with my own son, he won't
participate in any formal tests, so we
can only surmise about his cognition.
There are many different methods of
supporting communication (Speech
and Language Therapists will help
you more) e.g. PECS, total
communication, TEACCH, talking
mats – all can be tried to see how
your child responds consistently.
A3: I suspect the problem you’re
encountering is how the question is
posed. Very often it isn’t useful to
Q
: My daughter has put
on weight after moving
into her own flat, I think
partly due to poor cooking
by her carers. Does anyone
have any solutions?
A1: My friend drew up a four-week
menu plan for their son. It contains all
of his favourite food and two options a
week for ‘treats/going out’. This helps
with the shopping and budgeting, and
is a healthy food plan that means he
knows what he is going to get.
A2: The thing that most helped
my daughter was to ask at review
meetings for a dietician to do some
training and give advice to staff.
Weight gain can also be a result
of rispiridone.
describe function in terms of age,
particularly as a person’s functioning
in different areas might be wildly
different. My son is a case in point –
he is quite good at some things,
quite bad at others, is surprisingly
good at some things, and in some
areas where you might expect him to
be pretty functional, he isn't. In terms
of expressing how functional he is at
school, as he's off the curriculum
they use P scales (he is 12) and these
are pretty comprehensive but they
don't necessarily tell you a lot--they
are more a way to describe what he
can be observed to be doing.
A4: My 17 year old son was tested
last year according to the Vineland
Adaptive Behaviour Scales. The
testing was done by the Educational
Psychologist at an Epilepsy
Assessment Unit. My son is
non-verbal and has SLD, visual
impairment, epilepsy and various
other medical conditions, but they
could certainly carry out a test.
A3:I found a Jamie Oliver book very
useful. It is very basic and even has
instructions on boiling an egg or
making a basic tomato sauce. I’ve
found there is a huge problem with
the overuse of tinned food and
jars of sauces.
A4:We had a similar problem when
my daughter moved into her own
supported living flat. At first, I batch
cooked a range of healthy meals,
which I froze in small, individual
portions. After 3 years, the staff now
do this with some input from her. I
also printed out pictures of meal
options – she picks one and then
puts it in a box, so she can’t keep
choosing the same meal. We also
agreed certain rules such as no ‘treat’
foods in the flat, but she can choose
these when she is out. I requested
that if staff were eating their own
meals in her house that these didn’t
include ‘treat’ foods.
Recommendations for specific products in this article are made by people on
our Email Network; inclusion doesn’t constitute endorsement by the CBF. Readers
are encouraged to evaluate the benefits and risks of each product before use.
These questions and answers are taken from our email networks. Want to join
the debate? Membership of the networks is free to both families and
professionals supporting children or adults with severe learning disabilities.
Application forms are available to download at
www.challengingbehaviour.org.uk or email network@thecbf.org.uk.
CHALLENGING BEHAVIOUR FOUNDATION
UPDATES
News
A roundup of what’s been happening
Volunteer Awards
We are so grateful to all of our family carer and
professional volunteers, who commit time and effort to
everything from fundraising, to speaking at events, to
giving professional advice, to supporting other families.
To say thank you, we have made badge awards for our
most committed volunteers – a coloured badge for the
‘Volunteer Award’, silver for the ‘Continued Commitment
Award’, and gold for the ‘Exceptional Contribution Award’.
Sue Parsons and her CBF
volunteering badge
Volunteer Award: Ian Penfold, Balwinder Sandhu,
Sarah Roberts, Steph Chapman, Dawn Rooke,
Kate Farmer, Martin Jordan, Helen Cherry, Wendy Fiander,
Catie Bennett, Shirley Bennett, Emma Garrod, Ann Earley
and Theresa Joyce.
Continued Commitment Award: Jill Jack, David Jack,
Jackie Edwards, Jan Seamer, Sue Parsons, Diana Cutler, Cliff Hawkins, Jen Fookes,
Audrey Giles and Kate Sanger.
Exceptional Contribution Award: Lawrence Ireland, Sue Carmichael, Peter McGill
and David Congdon
PBS Competence Framework
The PBS (Positive Behavioural Support) Coalition has produced a PBS Competence
Framework. This resource provides a common knowledge and associated actions
necessary for the delivery of PBS to people with learning disabilities and behaviours
that challenge. It is designed to be used by family carers, professionals and
researchers to develop tools for PBS education, the recruitment, retention and
training of staff, and assessment tools.
Find out more and download the free Framework here:
www.pbscoalition.blogspot.co.uk
Gavin Harding: UK’s First Mayor with
Learning Disabilities
Selby, in North Yorkshire, have appointed Gavin Harding
as their mayor. He is the first person with learning
disabilities to achieve this in the UK. Mr Harding is also
probably the first UK councillor with learning disabilities;
he is starting his second term as a Labour town councillor
for Selby Northward.
He has said he wants to “make sure as chair of town
council meetings that we act in the best interests of the
public as much as we can and serve the community”.
Petition to the Scottish Parliament
Beth Morrison, a family carer, has lodged a petition calling on the Scottish Parliament
to urge the Scottish Government to introduce a National Guidance on the use of
restraint and seclusion in all schools. The petition has followed from parents’ concern
at what appears to be the inappropriate use of restraint, including physical restraint,
in special schools attended by their children. On March 17th, the Scottish
Parliamentary Petitions Committee took evidence from Beth Morrison, Ian Hood
(Learning Disability Alliance Scotland) and Kate Sanger (representing the CBF). The
Committee has agreed to write to a number of key organisations. You can see full
details of the petition and its progress here: www.bit.ly/scotpet
CHALLENGING BEHAVIOUR FOUNDATION
WHAT’S ON THE WEB
Innovative,
interesting or useful
resources available
free online
BILD PBS Animation
'An Introduction to PBS' is a short
animation that gives an overview of
PBS and how PBS approaches work in
practice when supporting an individual.
www.bit.ly/bildpbs
Contact a Family Videos
Contact a Family’s YouTube channel
has a collection of videos relevant to
the families of people with a learning
disability. www.bit.ly/cafvideo
List of Behaviour Support
Teams
Are you looking for somewhere to get
behaviour support for your family
member? Check out our list of
Behaviour Support Teams in each
region. www.bit.ly/bsteams
Find Me Good Care
Find Me Good Care
is a website set up
by SCIE (Social
Care Institute for
Excellence), with
advice about finding
good care alongside contact details of
organisations and services.
www.scie.org.uk/findmegoodcare
Involving Families in
Workforce Development
This resource is for organisations
whose staff work with people with
learning disability, and includes case
studies of when families have been
involved successfully.
www.bit.ly/involvefam
Found something interesting online
you’d like to share? Email it to
communications@thecbf.org.uk, post it
to our Facebook page or tweet it to us
@CBFdn.
Challenge 2015 Summer 9
GET INVOLVED
Art Competition
Collections
In spring we ran an illustration competition open to individuals
with a severe learning disability. The response was
tremendous, thank you to everyone who got involved.
Winning illustrations will be printed onto CBF fundraising
merchandise, which will be sold at events and retail outlets,
both on and offline. All work entered into the competition will
also be exhibited at a show* in Chatham later this year.
For more information and to find out where you can buy
one of these beautiful products be sure to follow our
Facebook page, www.facebook.com/thecbf, or email
laura.brown@thecbf.org.uk to sign up to our Supporters
News.
*If you would like to sponsor one of our events Laura would
love to hear from you!”
Thanks Scouts!
With the help of the 41st Medway Towns’ Scout Group we
held a bag pack and collection at ASDA Chatham earlier this
year, raising £223.19. Collections are a vital source of income
for the CBF, if you would like to hold a collection on our behalf
at your local supermarket then please contact Laura who
will be happy to help you organise this –
laura.brown@thecbf.org.uk.
Fundraising Auction Page
We have a new fundraising page on Facebook, www.facebook.com/cbffundraising. Here you will find all the latest CBF fundraising news, events
and auctions of donated items, including Eurostar and Odeon cinema
tickets. To be in with a chance of winning some fantastic prizes and to
help us raise vital funds, please ‘like’ the page and share with your
Facebook friends, thank you.
Challenge Events
A big thank you to our fantastic supporters who have been busy fundraising on our behalf across the south east.
Kingston Breakfast
Half Marathon
5k Fun Run
Ben Matthews ran the Kingston
Breakfast run back in March and raised
a whopping £926.25!
Tom Moore ran the Vitality Hackney Half
Marathon on Sunday 10th May, raising a
brilliant £328.75 so far.
Team George’ took part in a 5k fun run in
Crystal Palace on Saturday 9th May.
George and his family and friends have
so far raised over £1,480! Thank you to
George’s Mum, Sue Utley, a CBF Expert
by Experience, for organising this
fundraiser.
The Challenging Behaviour Foundation is the charity for children and adults with severe learning disabilities whose
behaviour is described as challenging and those who support them. We rely on people donating their time and money to us
to continue our work.
If you want to find out more about fundraising, or have an idea for a fundraising event, contact Laura Brown on
laura.brown@thecbf.org.uk, or 01634 838739.
10 Challenge Summer 2015
CHALLENGING BEHAVIOUR FOUNDATION
Resource order form
IN BRIEF
Thank you
A big thank you to Sophie McKane,
who has been volunteering in our
office for the past few months. Sophie
has been a huge help with sending out
Paving the Way, and has taken on a
huge variety of jobs for which we are
very grateful!
100 Club winners
Please note that all of these resources can be downloaded free of charge on
our website: www.challengingbehaviour.org.uk
All our information and resources relate to the care of individuals with severe
learning disabilities who are described as having challenging behaviour. We
are happy to send resources free of charge to parents/ unpaid carers.
Cost
The DVDs provide practical support from professionals and family carers.
Academics or learning disability professionals give expert guidance while
family carers share their experiences. The DVDs introduce each topic clearly,
explaining the key ideas and offering a wealth of practical information.
Everybody Matters DVD
February 2015
Robert Howard
St Albans
Self-Injurious Behaviour: DVD
April 2015
Daniel Cooper
Kent
Total £
CHALLENGING BEHAVIOUR DVD RESOURCES
Recent winners of the CBF 100 club,
winning £25 each were:
March 2015
Meryl Matthews
Isleworth
Number
£31.50*
An Introduction to Challenging Behaviour: DVD £31.50*
£31.50*
Communication & Challenging Behaviour: DVD £31.50*
Challenging behaviour – supporting change:
DVD
Learn about the causes of challenging behaviour,
and how to use a functional assessment to put
appropriate positive behavior support strategies
in place. (Two disc set)
£63.00*
*Free to parents/unpaid carers. Registered charities: DVDs £16.50 (or £33.00 for Challenging Behaviour –
Supporting Change). Price includes postage & packing in the UK only. Outside UK p&p £7.50 per item.
CHALLENGING BEHAVIOUR INFORMATION SHEETS
Have your say
We welcome articles from parents and
professionals. Please get in touch if
there is something you would like us
to write about.
The information sheets are written by experts and provide practical support
on a wide range of topics. Each information sheet contains a one-page
summary, as well as a longer document providing more detailed information.
The information sheets are suitable for both family carers and professionals.
Understanding Challenging Behaviour: Part 1
Finding the Causes of Challenging Behaviour:
Part 2
Positive Behaviour Support Planning: Part 3
Communication and Challenging Behaviour
Disclaimer
Health and Challenging Behaviour
While every care is taken in the
compilation of this newsletter, the
Challenging Behaviour Foundation
cannot be held responsible for any
errors or omissions, nor accept
responsibility for any goods or
services mentioned.
The use of Medication
© The Challenging Behaviour
Foundation. All rights reserved.
Further Information for Family Carers
The use of Physical Interventions
Specialist Equipment and Safety Adaptations
Impact of Caring on Families
Planning for the Future
All
information
sheets are
available
free of
charge on
the CBF
website.
To order by
post please
add £1.00
per sheet*
Ten Top Tips
BASIC INFORMATION PACK (consisting of
the 12 information sheets listed above)
£12.00*
The following additional information sheets are not contained in the basic information pack but may be
downloaded from the Challenging Behaviour Foundation website or ordered separately:
Booklist for Professionals
£1.00*
Difficult sexual behaviour amongst men and
boys with learning disabilities
£1.00*
SUB TOTAL CARRIED FORWARD
*All resources are free to parents/unpaid carers. Prices include postage
*and packing in the UK only.
/ Continued overleaf...
/ Resource Order Form continued...
Cost
SUB TOTAL CARRIED FORWARD
Number
Total £
Getting a Statement (Wales & Northern Ireland) £1.00*
Making Decisions - The Law
£1.00*
For Families: Getting an EHC Plan (England)
£1.00*
For Professionals: Developing an Education,
Health and Care Plan (England)
£1.00*
Getting Legal Authority to Make Decisions
£1.00*
Pica (eating inedible objects)
£1.00*
Mental Health Problems in People with
Learning Disabilities
£1.00*
Self-Injurious Behaviour
£1.00*
Did you know…..?
• We are a registered charity
and rely on donations, grants
and fundraising to finance
our work.
IN-DEPTH RESOURCES
Paving the Way
A guide for commissioners on how to develop effective local services
for children with learning disabilities whose behaviours challenge
FREE
• We do not charge family carers
for our services or resources.
8 Ways to Get a House
A guide to help families think about the different types of
accommodation and how they are funded.
£12.00*
• To keep costs down much of our
work is carried out by
volunteers.
A Guide for Advocates (England and Wales)
A comprehensive, practical guide for professional advocates; or
family carers advocating for their family member.
£16.00*
PBS Study Pack for Schools and Colleges
The Positive Behaviour Support study pack is designed for
teachers to increase understanding of behaviour. Note: This
resource is only available for schools and colleges.
Planning for the future: information pack
England / N Ireland / Wales
• Regular giving by standing
order makes your money go
further by keeping down
administrative costs.
£45.00
£10.00*
For anyone planning for the future of children aged 12 and upwards (transition), or concerned about the
support needs of adult family members.
Read more about all our in-depth resources online at www.challengingbehaviour.org.uk
DONATION - please consider a donation to support our work. All
proceeds go towards helping families caring for individuals with severe
learning disabilities whose behaviour challenges. Thank you.
*All resources are free to parents/unpaid carers. Prices include
postage & packaging in the UK only. Outside UK p&p £7.50 per item.
The CBF –
how you
can help
TOTAL
Please consider making a donation to help us support more families. If you
would like to donate regularly, please tick here
to receive a standing
order form.
Gift Aid means we can claim back the tax on your gift (25p for every £1 you
give) at no extra cost to you. Please tick here
to confirm that you would like
CBF to claim tax paid on this gift and any eligible past or future gifts.
Please note that to be eligible for gift aid you must pay at least as much UK
income tax as the amount that will be claimed by all charities you donate to
within the tax year.
Please indicate if you are a parent or unpaid carer. If you are
a registered charity please provide your charity registration number
• You can ‘Gift Aid’ your donation
if you are a UK tax payer, this
allows us to receive 25% extra
on top of your donation without
any further cost to you.
• You can fundraise for free!
There are a number of ways to
donate and raise money for us
without spending any extra
money. See our website for
details.
Your support really does make a big
difference to us. So, thank you!
For more information please email
fundraising@thecbf.org.uk
Name
Organisation
Address
Postcode
Telephone
Email (please print)
Your personal data may be held on computer and will be kept in accordance with the Data Protection Act 1998 under which
we are registered as a data controller. This data will not be passed on to any third party without prior consent.
Please make cheques payable to the Challenging Behaviour Foundation and
return to the Challenging Behaviour Foundation, The Old Courthouse,
New Road Avenue, Chatham, Kent, ME4 6BE
Alternatively, go to www.challengingbehaviour.org.uk to order online.
The Challenging Behaviour
Foundation
Registered charity number 1060714
(England and Wales)
Address: The Old Courthouse,
New Road Avenue, Chatham, Kent,
ME4 6BE
Email: info@thecbf.org.uk
Tel. 01634 838739
www.challengingbehaviour.org.uk