involving young people in their assessment and plans including the mental capacity act south east...

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

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

Parent Carer Views

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!

Young Persons Views

Hello! My name is Rosalind Hardy Im a young person from Kingston Upon Thames

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

These are some things I like Playing the piano Horse riding Watching X Factor Twitter Animals especially dolphins helping at my local stables

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

Childhood When I was 2 I could tie my own shoes Story of the key

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!

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

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.

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.

Moor lane

Getting a job! A year after college I got a job

Participation work Recruits Crew Presentations Health and Relationships Project Champions SEND Reforms Speaking at the July conference (350 people!)

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)

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!

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

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!

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

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!

Any questions

What the Code Says Jean Haigh/Chris Lewis SE7

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.

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

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

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

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?

31 The Mental Capacity Act what it is, how it works and best interest decisions Kate Jackson - NDTi 1

https://www.youtube.com/watch?v=wtDEbeXo V5M&feature=youtu.be

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?

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

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

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?

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

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:

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:

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

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

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

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

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

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

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:

My hopes and dreams Places that matter to me Important people Who I am Whats important to me My story Better understanding = better support

49 Email: [email protected]@prepforadulthood.org.uk Web: www.preparingforadulthood.org.ukwww.preparingforadulthood.org.uk FB: www.facebook.com/preparingforadulthoodwww.facebook.com/preparingforadulthood Twitter: @PfA_tweets@PfA_tweets Phone: 0207 843 6348

Group Exercise

Involving YP with very complex needs Sylvia Lamb Pathfinder workshop involving YP & Mental Capacity Dec 2014

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

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

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:

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

Involving Parents in Assessment and Planning with Young People Chris Lewis SE7

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

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

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

Decision Making With Educational Views Parental Views and Aspirations Specialist Advice Voice of the Child/Young Person Person Centred Planning

Decision Making By Young Person makes key decisions Specialist Advice Advice and reports from educational setting Support and guidance from parents

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

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?

65 Making the local offer accessible to young people Kate Jackson - NDTi 1

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.

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

68 Engaging Accessible Transparent and comprehensive

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!

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

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

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

78 www.preparingforadulthood.org.uk/resources/pfa- resources/local-offer www.preparingforadulthood.org.uk/resources/pfa- resources/local-offer www.sendpathfinder.co.uk www.sendpathfinder.co.uk www.Se7pathfinder.co.uk www.Se7pathfinder.co.uk www.trafford.childrensservicedirectory.org.uk www.trafford.childrensservicedirectory.org.uk www.wiltshirelocaloffer.org.uk www.wiltshirelocaloffer.org.uk www.lbbd.gov.uk/ChildrenAndYoungPeople/SEN www.lbbd.gov.uk/ChildrenAndYoungPeople/SEN http://www.northyorks.gov.uk/article/25426/SEND---preparing- for-adulthood http://www.northyorks.gov.uk/article/25426/SEND---preparing- for-adulthood

79 Email: [email protected]@prepforadulthood.org.uk Web: www.preparingforadulthood.org.ukwww.preparingforadulthood.org.uk FB: www.facebook.com/preparingforadulthoodwww.facebook.com/preparingforadulthood Twitter: @PfA_tweets@PfA_tweets Phone: 0207 843 6348

Wrap up and next steps

Contact Details [email protected] [email protected] 0207 651 0308

involving young people in their assessment and plans including the mental capacity act south east...

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