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The Mental Capacity Act and the SEND reforms
Anna Gill & Ellen Atkinson2nd March 2015
Implementing the SEND Reforms
Produced in collaboration with:Contact a FamilyCouncil for Disabled ChildrenEarly SupportInformation, Support and Advice Services Network
Mott MacDonaldNational Network for Parent Carer ForumsPreparing for AdulthoodThe Communications TrustThe Dyslexia-SpLD TrustAutism Education Trust
Welcome
Introduce yourself to the person on your right.
Say who you are, where you are from and what your aspirations for life were at the age of 14.
Discussion
Welcome and Introductions
This workshop aims to:
• Provide participants with information about the changes in the law for young people with SEND as a result of the Children & Families Act 2104
• Provide an opportunity to understand the Mental Capacity Act 2005 as it pertains to young people with SEND
• Be an opportunity to network with regional colleagues and to share challenges and solutions
• Provide examples of good practice• Inform people where to go for further support and
information.
Aims and Objectives
A reminder: the case for change
Too many children with Special Educational Needs (SEN) have their needs picked up late;
Young people with SEN do less well than their peers at school and college and are more likely to be out of education, training and employment at 18;
Schools and colleges can focus too much on the SEN label rather than meeting the child’s needs, and the current Statements/ Learning Difficulty Assessments do not focus on life outcomes
Too many families have to battle to find out what support is available and in getting the help they need from education, health and social care services; and
When a young person leaves school for further education, they enter a very different system which does not carry forward the rights and protections that exist in the SEN system in schools.
“We want children and young people with special needs and disabilities to achieve well in their early years, at school and in college; find employment; lead happy and fulfilled lives; and have choice and control over their support. The special needs reforms will implement a new approach which seeks to join up help across education, health and care, from birth to 25. Help will be offered at the earliest possible point, with children and young people with SEND and their parents or carers fully involved in decisions about their support and what they want to achieve. This will help lead to better outcomes and more efficient ways of working.”
The vision behind the SEND reforms
Parent Carer Views
Jamie
Learning Difficulty ‘Cheeky’
Scoliosis & osteoporosis
Happy
Diabetes
Wheelchairuser
Incontinence
Epilepsy
Strong-willed
Loves cheesy pop music
Reflux
Palliative Care Needs
Loves fish & chips
Handsome!
Fun
Very quietsometimes
‘Complex’
Stubborn
There is of course no There is of course no magical change in the magical change in the
child's abilities or needs child's abilities or needs on the eve of their 16on the eve of their 16thth
birthday!birthday!
What the Code Says
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 25th 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?
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The Mental Capacity Act The Mental Capacity Act What it is, how it works and best interest What it is, how it works and best interest
decisionsdecisions
1
https://www.youtube.com/watch?v=wtDEbeXoV5M&feature=youtu.be
Involving Young People in their Involving Young People in their DecisionsDecisions
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?What is the Mental Capacity Act?
The Act also ensures that independent support is available, in the form of Independent Mental Capacity Advocates (IMCA). IMCA’s are for those people who don’t have family and friends able to support them and are facing decisions about change of accommodation and/or serious medical treatment
Sometimes IMCA’s 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 SupportIndependent 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. It’s 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 Principles5 Key Principles
Families sometimes struggle with this for a number of reasons:
throughout our child’s life we have been constantly made to focus on everything they can’t do in order to get the support them 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 it’s because the Act has been misinterpreted and sometimes it has been because of a lack of understanding.
What do families say?What do families say?
The Mental Capacity Act states that any judgement about a person’s 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 can’t 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 person’s capacity is in doubt
How mental capacity is assessedHow mental capacity is assessed
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: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: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 picturesa DVDsign languageany other method that the person uses to communicate
Accessible InformationAccessible 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 Total Communication
Lucy is a young woman who does not use 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 Lucy’s communication had lost its meaning. Everyone agreed to share and record their understanding of Lucy’s communication
Lucy’s Story Lucy’s Story
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.
Best Interest DecisionsBest Interest Decisions
Exploring Capacity Jane’s 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 Jane’s video of last holiday, talked through what the break will involve
How did you explore the person’s understanding? Following Jane’s communication plan – Jane didn’t indicate yes or no
How did you explore the person weighing up the pros and cons?
Jane didn’t indicate either way in accordance with her communication plan
How did the person let you know their decision? Jane didn’t indicate a decision
What is the outcome of the capacity test? Jane doesn’t 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
ChecklistChecklist
Who is Jane?Funny Outgoing KindLoves trying new things
Decision to be madeA weekend break to Scotland
People involvedJane’s mum – AnneJane’s sister – KerryJane’s 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
ProsJane loves trying new thingsJane enjoys being in different environments
ConsJane 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 person’s 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 person’s 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:Best Interest Decision making checklist:
My hopes and dreamsPlaces that matter to meImportant peopleWho I amWhat’s important to meMy story
Better understanding = better Better understanding = better supportsupport
Provide protection for vulnerable people ( over 18) who are accommodated in hospitals or care homes in circumstances that amount to deprivation of their liberty, and who lack capacity to consent to the care or treatment they needSafeguards ensure that if someone is deprived of their liberty in these circumstances, that person still has specific rightsOne of those rights is to have a ‘relevant person’s representative’ or RPR who will often be a family member This support is independent of the commissioners or service providers and is to maintain contact and represent that person in the best possible way in all matters to do with their loss of libertyhttp://www.scie.org.uk/publications/ataglance/ataglance43.asp
What are Deprivation of Liberty What are Deprivation of Liberty Safeguards ( DOLS)? Safeguards ( DOLS)?
34
Preparing for Adulthood –Preparing for Adulthood –Contact UsContact Us
• Email: [email protected]
• Web: www.preparingforadulthood.org.uk
• FB: www.facebook.com/preparingforadulthood
• Twitter: @PfA_tweets
• Phone: 0207 843 6348
Involving young people with very complex needs & Mental Capacity
We all know it is possible to communicate without language
How does this individual 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
• In your daily role, how do you encourage and enable communication with children and young people with complex needs?
Encourage communication
• Being natural and intuitive• Making yourself available on CYP’s 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 they may have lost interest
• Developing a feel for good interactive approaches
Some approaches for promoting communication with CYP with learning difficulties may include:
Film clips in this presentation taken from: Training materials for learners with severe, profound and complex learning difficultieshttp://complexneeds.org.uk/modules/Module-2.2-Considering-communication-and-interaction/All/m06p010a.html
See also: Assistive technology http://www.aspirationsforlife.org/
SENSE http://www.sense.org.uk/content/sense-resources-send-reforms
For your information
Support available to local areas
Delivery Partners
Contact a FamilyCouncil for Disabled ChildrenEarly SupportInformation, Support and Advice Services NetworkNational Network for Parent Carer ForumsPreparing for AdulthoodThe Communications TrustThe Dyslexia-SpLD TrustAutism Education Trust
