Involving young people in their assessment and plans including
the Mental Capacity Act South East and London 2 Pathfinder Champion
Event 2 nd December 2014
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Accessible to all Champion contact details Calendar of events
for the region Delivery Partner information Useful resources and
links www.se7pathfinderchampion.co.uk South East and London 2
Regional Wiki
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Parent Carer Views
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There is of course no magical change in the child's abilities
or needs on the eve of their 16 th birthday! There is of course no
magical change in the child's abilities or needs on the eve of
their 16 th birthday!
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Young Persons Views
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Hello! My name is Rosalind Hardy Im a young person from
Kingston Upon Thames
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About me Im 26 years old and having Asperger Syndrome doesnt
make me special or difficult to talk to! Its a myth that people
with Aspergers arent social and I can look you in eye
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These are some things I like Playing the piano Horse riding
Watching X Factor Twitter Animals especially dolphins helping at my
local stables
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These are some things I dont like I have a real phobia of
balloons and other things that make loud bangs like party poppers,
crackers, thunder and fireworks. My phobia makes it quite difficult
to go out even just to walk into town. Rude peopleSpicy foodsPeople
arguingWasps
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Childhood When I was 2 I could tie my own shoes Story of the
key
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Education All my schools were Special needs. This helped not
only with the formal education but also with the social stuff! This
enabled me to go to a mainstream college and I enjoyed it!
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Things that have helped me are Getting extra support in all my
schools Going to activity groups for disabled children and young
people Being supported by people who understood me Taking part in a
Person- Centred Planning Project Being involved and giving my
views
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Person Centred Plan When I turned 14, I was involved in a
Person Centred Plan. At first this made me feel nervous and I
remember thinking would I fit in? However I had the comfort of
having my parents with me.
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Moor Lane As soon as I knew it I had an circle of support! This
led me to enjoy the 14 + Group and then 16+ I even went onto
getting a holiday job working with the different activity
groups.
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Moor lane
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Getting a job! A year after college I got a job
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Participation work Recruits Crew Presentations Health and
Relationships Project Champions SEND Reforms Speaking at the July
conference (350 people!)
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Why is Participation important? Young people have to use the
service it isnt right that adults have all the decisions Because
disabled young people dont usually get to say what they want to say
We get a say in what we do To make sure activities are open to us
and not too hard To help young people with learning disabilities
understand Developing skills and confidence (transferable
skills)
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AFC Champions Im one of the Champions for Kingston Overall
there are 11 Champions in total (5 within Kingston and 6 within
Richmond) We have made an real difference not only for us but for
all young people with disabilities!
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SEND Champions Project Accessible information Local Offer
website Education, Health and Care Plan Meetings e.g Personal
Budgets Child or young person at the centre Creating information
Consultation
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I was a child who was frustrated because I couldnt express
myself properly, but because I have been given the opportunity to
have my say, I now feel included and confident within myself and
for my future. I have achieved a lot of things already, but there
are a lot more I want to achieve.and here are a few of them!
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To go to Africa To get a permanent job working with young
people with special needs To meet my favourite celebrities! To live
independently To continue to share my favourite horse To go to
Australia and New York My hopes and dreams for the future
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Happy note Im still very much involved in the participation
work with AFC As Im getting older Im keen on encouraging younger
people to be involved with Participation ..and I have even passed
my driving test!
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Any questions
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What the Code Says Jean Haigh/Chris Lewis SE7
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Paragraph 8.15 After compulsory school age the right to make
requests and decisions under the Children and Families Act 2014
applies to (young people) directly, rather than to their parents.
Parents, or other family members, can continue to support young
people in making decisions, or act on their behalf, provided that
the young person is happy for them to do so, and it is likely that
parents will remain closely involved in the great majority of
cases.
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Duties on Local Authorities Support and involve the child and
his or her parent or young person Offer advice and information
directly to the young person Make joint commissioning arrangements
about education, health and care provision Keep education and care
provision under review
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Duties on Local Authorities Include provision which will help
children and young people prepare for adulthood and independent
living Ensure reviews of EHC plans from Yr. 9 onwards include a
focus on preparing for adulthood Make young people aware through
their Local Offer of the kind of support available in higher
education
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Specific decision making rights about EHC Plans Request an
assessment up to 25 th birthday Make representations about the
content of their EHCP Request a particular institution is named in
their EHCP Request a personal budget Right to appeal
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Support to exercise these rights Informed decision making
Accessible Local offer which is easy to navigate Easy to understand
communications/letters Informed professionals IASS Advocacy
Anything else? Discuss what are your strengths and what additional
areas of development are there?
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31 The Mental Capacity Act what it is, how it works and best
interest decisions Kate Jackson - NDTi 1
The Mental Capacity Act 2005 came into force in 2007. It
provides a legal framework for the care, treatment and support of
people who lack capacity to make some, or all, decisions for
themselves and/or are unable to manage their own affairs. The law
applies to everyone over the age of 16 in England and Wales. The
Mental Capacity Act is an important piece of legislation that
families need to be aware of. It aims to protect both the
individual who lacks mental capacity as well as those people who
support them, including family members, friends and/or paid
workers. The focus of the legislation is that the individual should
be at the centre of the decision making process, whilst fully
supporting the involvement of the people who know and love them
best What is the Mental Capacity Act?
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The Act also ensures that independent support is available, in
the form of Independent Mental Capacity Advocates (IMCA). IMCAs are
for those people who dont have family and friends able to support
them and are facing decisions about change of accommodation and/or
serious medical treatment Sometimes IMCAs are used even when family
and friends are around. This can happen if there is a conflict of
interest or when there is an issue about the ability to provide
competent support. The Mental Capacity Act covers major issues
about property, financial affairs, healthcare treatment and where a
person lives, as well as everyday decisions, including those about
what the person eats and their personal care. Independent Mental
Capacity Support
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1. Everyone has a right to make his or her own decisions and
must be assumed to have capacity unless it is proved otherwise.
Assume I can 2. A person must be given all practicable help before
anyone treats them as not being able to make their own decisions.
Give me the right support 3. Just because a person makes what might
be seen as an unwise decision, they should not be treated as
lacking the capacity to make that decision. Its up to me 4.
Anything done or any decision made on behalf of a person must be
done in their best interests. Is it right for me? 5. Anything done
for, or on behalf of, a person who lacks capacity should the option
least restrictive of their basic rights and freedom. I have the
same rights as anyone else 5 Key Principles
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Families sometimes struggle with this for a number of reasons:
throughout our childs life we have been constantly made to focus on
everything they cant do in order to get the support they, and we as
families, need - benefits forms, statements of special educational
needs and health or social care support some of us will have been
wrongly informed at the time of diagnosis that our child would
never be capable of living an independent life or that they have a
mental age of 18 months or 5 years (for example), i.e they will
always be a child. We also know that for many families the Mental
Capacity Act is a bit scary because they are aware of situations
where it has been abused and used to keep families at a distance.
Sometimes its because the Act has been misinterpreted and sometimes
it has been because of a lack of understanding. What do families
say?
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The Mental Capacity Act states that any judgement about a
persons ability to make decisions must be on: a
decision-by-decision basis. It recognises that people should be
encouraged to make whatever decisions they have the capacity to
make rather than assuming that they cant make any decisions at all.
The test for capacity introduced by the act is called the two stage
test. This test is usually carried out when a persons capacity is
in doubt
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Is there an impairment in the functioning in the persons mind
or brain? If the answer is yes move to the second stage. Stage
1:
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Does the impairment or disturbance result in the person lacking
the capacity to make a particular decision? You can answer this by
asking four questions: can they understand the information given to
them about the decision? can they retain that information long
enough to be able to make the decision? can they weigh up the
information available to make the decision? can they communicate
their decision by any method of communication? Stage 2:
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How information is presented is really important. All
information must be presented in a way that is most accessible to
the individual. This could be using: easy words and pictures a DVD
sign language any other method that the person uses to communicate
Accessible Information
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Communication is a two way process. As with any message, one
person expresses it and someone else has to understand and receive
it. Total Communication is a communication philosophy that promotes
person centred practice. Skilled communicators: Listen (to noises
then words) Look (at faces and expressions) Pay attention (to other
people) Take turns (in actions and noises) Be interested (in
communicating) Total Communication
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Lucy is a young woman who does not sue words to communicate her
wishes, she uses sounds and gestures. It is important for Lucy to
spend time with her family, friends and paid supporters. Over time
Lucy began to demonstrate anxiety and distress. Her family and
friends had growing concerns and felt they were not understanding
Lucy. During discussions it became apparent that each individual
both interpreted and responded differently to Lucy. In any given
week this could mean Lucy communicated with sixteen different
people and received sixteen different responses. This meant Lucys
communication had lost its meaning. Everyone agreed to share and
record their understanding of Lucys communication
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Once an individual has been assessed as lacking capacity to
make a particular decision at that time, the decision will then be
explored on their behalf. This is called Best Interest Decision
Making. The Best Interest Checklist is used to ensure that the best
possible decision is being made on their behalf. It provides the
framework for ensuring that the individual remains at the centre of
the process. Once an individual has been assessed as lacking
capacity to make a particular decision at that time, the decision
will then be explored on their behalf. This is called Best Interest
Decision Making. Best Interest Decisions
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Exploring CapacityJanes example What is the decision? The
decision to spend 250 on a weekend break to Scotland Who was
involved? Key worker and Rachel (staff member) who has a close
relationship with Jane When did you present the choice of decision?
On Monday 21/04/14 and Wednesday 23/04/14 in the evening when other
people were not around How did you present the information to the
person? Used photographs of last break, played Janes video of last
holiday, talked through what the break will involve How did you
explore the persons understanding? Following Janes communication
plan Jane didnt indicate yes or no How did you explore the person
weighing up the pros and cons? Jane didnt indicate either way in
accordance with her communication plan How did the person let you
know their decision?Jane didnt indicate a decision What is the
outcome of the capacity test? Jane doesnt have the capacity to make
this decision at this time When will this be reviewed?We will begin
the process for best interest decision- making. We will review for
next holiday Checklist
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Who is Jane? Funny Outgoing Kind Loves trying new things
Decision to be made A weekend break to Scotland People involved
Janes mum Anne Janes sister Kerry Janes supporter Sarah Significant
events relating to the decision Jane had a great time in Devon last
year she laughed all of the time Jane went away with her friend 4
years ago and became upset wanting to return home early Pros Jane
loves trying new things Jane enjoys being in different environments
Cons Jane may become anxious and want to return home early Best
interest decision: Jane should go on her weekend break to Scotland
with transport available should she want to return home early
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cannot be based simply on the persons condition, appearance or
behaviour all relevant circumstances must be considered every
effort must be made to encourage the person to take part in the
decision must consider if the person is likely to regain capacity
take into account the persons past and present wishes, feelings,
values and beliefs take into account the views of the people close
to the person special considerations apply about life sustaining
treatment. Best Interest Decision making checklist:
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My hopes and dreams Places that matter to me Important people
Who I am Whats important to me My story Better understanding =
better support
Involving YP with very complex needs Sylvia Lamb Pathfinder
workshop involving YP & Mental Capacity Dec 2014
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It is possible to communicate without language How does this
child / young person communicate? Express likes / dislikes Use a
yes / no response Make choices Use signing systems eg Makaton,
Signalong, Use Communication systems/aids eg Picture Exchange
Communication System (PECS), Voice Output Communication Aids
(VOCAs), ipad It is also possible to use language without
communicating Communicating
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Get to know the child/young person Let the CYP direct Guide
don't lead Be observant (see example chart) Don't impose Use
routine Be patient Interact Be positive Encourage
communication
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Being natural and intuitive Making yourself available on CYPs
terms Joining the person's world Using humour relaxing, smiling,
Involving yourself in behaviours that seem important to the CYP;
Respecting the CYP's right to not participate, scanning for signals
that s/he has lost interest Developing a feel for good interactive
approaches Some approaches for promoting communication with CYP
with learning difficulties may include:
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Film clips in my presentation taken from: Training materials
for learners with severe, profound and complex learning
difficulties
http://complexneeds.org.uk/modules/Module-2.2-Considering-
communication-and-interaction/All/m06p010a.html See also: Assistive
technology
http://www.aspirationsforlife.org/http://www.aspirationsforlife.org/
SENSE http://www.sense.org.uk/content/sense-resources-
send-reformshttp://www.sense.org.uk/content/sense-resources-
send-reforms For your information
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Involving Parents in Assessment and Planning with Young People
Chris Lewis SE7
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A Reminder Paragraph 8.15 After compulsory school age the right
to make requests and decisions under the Children and Families Act
2014 applies to (young people) directly, rather than to their
parents. This should not come as a surprise
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The Voice of the Child & the Journey to Independence Up to
5 Years Parents are the main decision makers 5 - 10 Years The
childs views will be listened to but parents continue to make
decisions 10 -16 Years The childs views should be listened to and
have equal weight 16 Years + The young person is the main decision
maker regarding their education and training
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Journey to Independence -The Parental role Main decision maker,
provider and carer Champion and Carer Co-decision maker Friend and
supporter Letting your child grow into adulthood is never easy
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Decision Making With Educational Views Parental Views and
Aspirations Specialist Advice Voice of the Child/Young Person
Person Centred Planning
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Decision Making By Young Person makes key decisions Specialist
Advice Advice and reports from educational setting Support and
guidance from parents
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Helping Decision Making Prepare the young person well in
advance Give practical examples of options and consequences Adapt
information and break it down Use different communication aids Get
an independent person to support
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To Think About How might the relative responsibilities for
preparing young people for decision making be shared between
parents and professionals? What potential areas of difficulty might
arise in planning for transitions to adulthood? How best can young
people be supported in the decision making process? Any other
issues?
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65 Making the local offer accessible to young people Kate
Jackson - NDTi 1
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66 Local authorities must publish in one place information
about provision they expect to be available in their area for
children and young people from 0-25 who have SEN. Must include both
local provision and provision outside the local area that the local
authority expects is likely to be used for children and young
people with SEN, including national provision.
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67 To provide clear, comprehensive and accessible information
about the support and opportunities available; and To make
provision more responsive to local needs and aspirations by
directly involving children and young people with SEN, parents and
carers, and serve providers in its development and review. Intended
to help local authorities to improve provision. It should not
simply be a directory of existing services
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68 Engaging Accessible Transparent and comprehensive
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70 Children, young people and families All schools and colleges
Early years providers Childrens centres Health Social care People
involved in preparing for adulthood Pupil referral units Youth
offending teams LA (education and training, social care, functions
relating to preparing for adulthood) Appropriate others!
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71 SE7 as a region: set out principles that should be followed
when completing the Local Offer (LO) locally worked with relevant
groups (e.g. parents, professionals, providers) to help shape the
principles, guidance and any recommendations developed/developing
framework and guidance for each individual strand: Social care
Education Health Towards independence
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73 Quality Information, Advice and Guidance Key worker
Developing young people's voice Finding Employment Paid employment
Self Employment Social Enterprise Independent Living (obtaining
accommodation) Housing Options Choice and control over life and
support, including: Personal Assistants Assistive Technology
Community Inclusion (participation in society) Support to have
Friendships & Relationships Support to access the Local
community Volunteering Local opportunities for young people to
influence policy and practice
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75
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76 Overview Advice and support EHC assessment plans and
personal budgets Education and learning Health Social Care
Preparing for Adulthood Leisure and social opportunities
Transport