1. Series 5: Engaging Children and Young People
Implementing the SEND Reforms
Series 5: Engaging Children and Young People
Introduction:
Opportunities for children and young people to participate in decisions and issues that affect them have increased significantly, however this is not matched for disabled children and young people who still face significant barriers and challenges to participation.
Those who do participate are usually the most able and articulate young people.
Disabled children and young people are often denied opportunities to participate at even the lowest levels of decision making because they are not given enough information and their access needs, such as communication needs are not met
Produced in collaboration with:
Contact a Family
Council for Disabled Children
Early Support
Information, Support and Advice Services Network
Mott MacDonald
National Network for Parent Carer Forums
Preparing for Adulthood
The Communications Trust
The Dyslexia-SpLD Trust
Autism Education Trust

2. Welcome and Introductions

3. Aims and Objectives
To understand participation as a right for disabled children and young people.
To understand the principles and relevance of section 19 in relation to disabled children and young people.

4. The vision behind the SEND reforms
“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.”
What the DfE want to achieve through these reforms.

5. Case for change
Too many children with 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 Statements / LDA 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.
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 at school.

6. Young people’s views on participation
“It means so much when people listen to me, but when they don’t I just tend to not bother. Kind of like as if I’m worthless.” “We can make our own decisions. We have our own ideas about what we’d like to achieve.” “I believe that disabled young people should be involved in decisions that could really affect them because they are the ones that are going to be affected and they know what helps them in life and what doesn’t.”
Outline the importance of participation from young people’s point of view using quotes from young people who’ve benefited from authentic engagement opportunities. Important to highlight why non-participation is disempowering for young people.

7. Cultural change
Children and Families Act: PART 3 19 Local authority functions: supporting and involving children and young people A local authority in England must have regard to… (a) the views, wishes and feelings of the child… or the young person… (b) the importance of the child… or the young person participating as fully as possible in decisions… (c) the importance of the child… or the young person being provided with the information and support necessary to enable participation in those decisions
This sets out what the Children and Families Act says about the participation of children and young people.
Important to highlight that it also extends the right to appeal to SENDIST to children and young people – which will obviously have implications for how these young people are supported to participate and have their views heard in these decision making processes.
Personalisation agenda will also have a huge impact on how to involve disabled children and young people in decision making
Note: Clause 19 relates to children and young people’s involvement in decision-making in decisions about their individual services and care, not collective or strategic decision-making.

8. Participation as a Right
United Nations Convention on the Rights of the Child
United Nations Convention on the Rights of Disabled People
Equality Act
The Children Act 1989 and 2004
NHS Act 2006
Various government initiatives, programmes and guidance
In addition to the CFA there are lots of other statutory duties and legislative drivers that currently exist to promote disabled young people’s participation.
UNCRC
Article 12: Children have the right to say what they think should happen when adults are making decisions that affect them, and to have their opinions taken into account
Article 13:The child shall have the right to freedom of expression: this right shall include the freedom to seek, receive and impart information and ideas of all kinds, regardless of frontiers, either orally, in writing or in print, in the form of art, or through any other media of the child’s choice.
Article 23: Children who have any kind of disability should have special care and support so that they can lead full and independent lives
UNCRPD – article 7 - States Parties shall ensure that children with disabilities have the right to express their views freely on all matters affecting them, their views being given due weight in accordance with their age and maturity, on an equal basis with other children, and to be provided with disability and age-appropriate assistance to realise that right
Equality Act – Duty to actively promote disability equality. Duty on providers to make reasonable adjustments
Children’s Act 1989 section 17 and Children’s Act 2004 section 53: places a duty on local authorities, so far as is reasonably practicable and consistent with a child’s welfare, to ascertain the wishes and feelings of children in need and to give these due consideration (with regards to the child’s age and understanding)
NHS Act 2006 section 242: Duty on providers of health services to make arrangements to ensure that service users are involved in planning, development and decisions about services.
There are also various government initiatives, programmes and guidance on participation. Most notable are;
Aiming High for Disabled Children: Better Support for Families (2007)
No specific funding for disabled young people’s participation, but many services were able to offer participation opportunities to young people through this programme – since ring-fenced funding has ended, those opportunities are also dropping off
Valuing People (2001) and Valuing People Now (2009)
Principles of Rights, Independence, Choice and Inclusion; promoting the use
Standard 8 of the National Service Framework for Children, Young People and Maternity Services (NSF) (2004)
“Professionals should ensure that disabled children especially children with high communication needs are not excluded from the decision-making process. In particular professionals should consider the needs of children who rely on communication equipment or who use non-verbal communication such as sign language.”

9. Definition of Participation
Participation is the active process by which individuals or groups can influence decision-making and bring about change.
Establish that there is no one agreed definition of participation but it can loosely be described as above. The term covers a broad continuum of involvement in decisions involving different processes. There will be nuances in terms of context, levels of engagement and decision making and transfer of power. The following slides go into this in a bit more detail.
Discussion Point: Opportunity for the group to talk about what they understand participation to mean and share their experience of participation.

10. The importance of involving children and young people
To ensure that changes are based on the lived experiences of children and young people
To uphold children’s rights
To fulfil legal responsibilities
To improve services
To improve decision making
To promote children’s protection (Sinclair and Franklin, 2000)
Increase experience, skills, confidence, responsibility, independence, control, shows value and respect
Enables us to provide better, more inclusive, effective services, where children feel ownership and are more engaged.
Highlight the benefits of engaging children and young people in a decision-making process.
Discussion Point: Why do you the group seek to involve and engage with children and young people? What opportunities can they create and how will it bring value to the work they do?

11. Ladder of Participation
Explain some of the basic theory of participation. The most common approach is the Arnstien Ladder of Participation.
Originally developed by Sherry Arnstein 1969 and adapted by Roger Hart 1992 this hierarchical model reinforces the concept of ideal participation and will help the group visualise the different stages to participation.
Highlight the different levels of participation and talk about how each level can be appropriate at different times to meet the expectations of different interests.
Discussion Point: Ask group to give examples of each level and to discuss which situations may suit one of the different levels.

12. Degrees/ levels of Participation
Degrees of Participation
Assigned but informed
Adult-initiated, shared decisions with young people
Youth-initiated and directed
Youth initiated, shared decisions with adults
Consulted and informed
The Degrees of Participation is based on a theory proposed by Phil Treseder (1997) Empowering Children and Young People: Promoting Involvement in Decision Making, Children’s Rights Office & Save the Children.
This shows five degrees of participation as five different but equal forms of good practice. Each of these approaches result in young people being involved in influencing decisions about their lives which is in turn empowering.
Assigned but informed = YP assigned a specific role, views taken into account
Consulted and informed = YP give advice/ views, informed about how their views influence decisions made by adults
Adult initiated, shared decisions with young people = YP are involved in decision making together with adults
Youth initiated, shared decisions with adults = YP share power and responsibility for decision making with adults
Youth initiated and directed = YP make autonomous decisions
Discussion Point: Ask the group to choose which one will have the most benefit for a specific purpose relating to their role.

13. Degrees/ levels of Participation
This is Kirby et al’s model of the level of participation (2003)
Participation activity should be determined according to the circumstances and the participation children and young people.

14. Be clear about the focus
Where individual decisions are being taken about children’s own lives.
Where services for or used by children are being developed or provided locally.
Where national policies or services are being developed or evaluated.
CYPU (2001) Learning to listen: Core Principles for the involvement of Children and Young People
Important to ensure that there is a clear focus when planning and organising participation activities. Here are some good practice examples about each ‘level’
Disabled young people having a say in their own lives
- This includes formal (formal) as well as informal methods (making day to day choices)
Advocates supporting disabled young people prepare for and lead their looked after children reviews
Young disabled people supporting and training other young disabled people in particular issues for example using electronic communication aids
Disabled young people influencing the services they receive
Disabled young people being involved in recruitment – different stages of recruitment including short-listing candidates, choosing questions, taking part in formal panel interviews, giving feedback to managers
Observation in service settings to collect children’s views about what activities they like and don’t like in the service they use
Disabled children influencing strategic planning
Promoting disability equality in schools through DVD and training package
Young representatives in adult meetings – note that the meetings have to be made accessible to the young people involved

15. Difference between individual and strategic participation
Engagement of individual disabled children and young people
Engagement of individual parent carers and families
Strategic participation of parent carers
Strategic participation of disabled children and young people
It is important that local areas embrace all of these – and not one at the exclusion of others
Highlight the difference between individual and strategic participation to ensure a complete participation journey.

16. Key Principles for Inclusion
Inclusion is…
… being welcome.
… being part not apart.
… going where you want to.
… being actively involved.
… people expecting you.
… getting help when you need it.
CDC Inclusion Policy (2008)
These are also important principles for participation.
Inclusion is about the right of disabled children and young people to access the same opportunities as non-disabled children and young people.
Participation is about supporting disabled children and young people to have a say in all decisions and issues that affect them.
For inclusion to be meaningful and effective we need to actively listen to and engage children and young people. So, inclusion relies on participation.
At the same time, for participation to be effective and meaningful, it needs to be fully inclusive and accessible.
Inclusive participation also means recognising that all children can participate, including children with complex needs and communication impairments.
The question needs to be not whether disabled children and young people can participate… but how they can participate.

17. Mental Capacity Act How the Mental Capacity Act works
The Act sets out five key principles which must underlie everything done in relation to someone who may lack capacity to make a decision for themselves: 
It should be assumed that everyone can make their own decisions unless it is proved otherwise.
A person should have all the help and support possible to make and communicate their own decision before anyone concludes that they lack capacity to make their own decision.
A person should not be treated as lacking capacity just because they make an unwise decision.
Actions or decisions carried out on behalf of someone who lacks capacity must be in their best interests.
Actions or decisions carried out on behalf of someone who lacks capacity should limit their rights and freedom of action as little as possible.
Under the Mental Capacity Act the issue of capacity is decision-specific; this means that the test of someone’s capacity can only be made in relation to a particular decision that needs to be made at a particular time. This is an important safeguard against blanket assessments of someone’s ability to make decisions based on their disability or condition. It also recognises the fact that someone may be able to make some decisions but not others.

18. Young person and parent carer participation
Young person’s feedback on their experience of accessing services and support: “You do tend to get parents spoke to instead of you, or you don’t get involved as much because you just get over looked.” It’s important to encourage and provide support to parent carers so that they are able to play an active role in the participation of the child or young person.

19. Group Discussion
In small groups, discuss our experiences of models of involving young people:
What is the purpose of young people’s involvement?
What process/ structure/ mechanism will best support young people’s involvement?
What do you perceive to be the biggest challenges and how will you overcome these?
How will you as individuals support the involvement of young people in the network?
Next steps/ planning – do you need some core principles or a participation strategy?

20. Support available to local areas
Pathfinder Champions North West Wigan, Manchester. Salford & Lancashire North East Darlington and Early Support Yorkshire and Humber North Yorkshire, Calderdale and York City West Midlands Consortium of 13 LAs East Midlands Leicester and Nottinghamshire
East of England
Hertfordshire and Bedford
London 1
Bromley, Bexley and Enfield
London 2
SE7 (supported by Mott MacDonald)
South East
South West 1
Cornwall (supported by Mott MacDonald)
South West 2
Southampton and Portsmouth (supported by Mott MacDonald)

21. Support available to local areas
Delivery Partners
Autism Education Trust
Contact a Family
Council for Disabled Children
Early Support
Information, Support and Advice Services Network
National Network for Parent Carer Forums
Preparing for Adulthood
The Communications Trust
The Dyslexia-SpLD Trust
Mott MacDonald

22. Evaluation
Please help us to keep improving these workshops by completing the evaluation form at Participant evaluation: Facilitator evaluation:

23. The Implementing the SEND reforms workshop series has been collaboratively produced by:
The workshop series has been co-produced by the following organisations.

24. Implementing the SEND reforms workshop series
Series 1: Transitioning from the old to the new system Series 2: Understanding EHC plans Series 3: Best practice in joint commissioning Series 4: Engaging parent carers – Wednesday 25th March 2015 Series 5: Engaging children and young people Series 6: Preparation for adulthood – Tuesday 10th February 2015, Series 7: Understanding SEN Support Series 8: Early Years providers – Wed 21st January 2015 Series 9: Personal budgets – Wed 4th March 2015 Register for future events using Eventbrite