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Family Leadership

For many years the North West Training and Development Team has been working to increase social inclusion and develop family leadership to enable disabled adults, their families and the people who support them make informed decisions in order to get the best life possible. The lead consultant for family leadership is Lynne Elwell.

Lynne Elwell
Consultant
Email: lynne.elwell@nwtdt.com
Mobile: 07773 348 311

I worked as a photographer until having my children. When Nicola, the second of my five children became disabled at the age of eight months, I made the decision to stay at home to support her, it was through Nicola that I became aware of the traditional response to disabled people from society and services.
For the past 20 years I have taken part in and led training. Designing and developing work on Community Building, Working with Families, Circles of Support and Advocacy. I have also renewed my interest in photography, working with disabled people to produce positive images of disabled people.

In the past eight years I have co-ordinated seven Partners in Policymaking courses in the north west of England, and have supported course graduates to run courses in the south east, the north east and in the north west, Merseyside, Wigan, Wirral. I have been instrumental in ‘spreading the word’ about the Partners. The course has been run several times in Scotland, two courses in Ireland. I have designed courses based on the successful Partners in Policymaking course, Sharing the Challenge, this course is aimed at parents of disabled adults and self advocates, Kindred Spirits, which is designed for people working with disabled children and their families (kindred meaning people who are related to each other in some way, and who have a common bond or goal), and Tomorrow’s Leaders, a course designed for the national self advocacy forum.

Following two international academies plans are being made for more courses to run.

I currently work part-time for NWTDT and in September 2005 I took on the part-time role as a Family Leadership Development Co-ordinators for the Valuing People Support Team. In this role I will work in the North West to find areas where family leadership is starting to develop and give people help to build on this, this will include developing the kind of education, training and supports they want to build a network of families who can continue to affect governmental policies.

Lynne Elwell, 2005

Since 1996 NWTDT have been running an annual programme of Partners in Policymaking, which is an innovative leadership development course for families who have disabled children and for disabled adults. Since 1999 we have been developing other programmes, Sharing the Challenge, which is aimed at families who have disabled children over the age of sixteen and for disabled adults. Kindred Spirits a course that brings together people who work in social services, education and the health authority, with family members. Tomorrow’s Leaders, which was commissioned by the valuing people team to inform the national self-advocacy forum. And Sharing Knowledge a course for families who have children who are going through the transition process from children’s to adult services.

Leadership Training Courses

Partners in Policymaking

It is now a requirement of local authorities and health authorities that those people who use services should be not only consulted but much more closely and actively involved in policymaking. People who rely on support from services need preparation for this role. They need to think about what good practice is and also how they can contribute to policymaking.
Partners in Policymaking is a leadership training programme for disabled adults and parents of disabled children up to school leaving age.
The course takes two days a month over eight months. It describes state of the art practice. Assignments between sessions give participants opportunities to practice skills of finding information, making contact with policymakers and people who work in services, presenting their views, learning how decisions get made and how to influence them. They are provided with packs of books, articles from journals and other documentation at each session, to form the basis of their own libraries.

Course Aims
The course aims to provide information and skills training so that people with disabilities and family members can speak for themselves.
The course is intended to enable participants to:

be aware of options and possibilities in different areas of people’s lives so that they are as knowledgeable as the supposed experts on state of the art thinking and practice
contribute to policymaking and implementation in wider service development, locally and nationally
become real partners with the professionals and the policymakers
have the confidence and competence to influence decisions about services and negotiate much more successfully when decisions are made about what is needed
make informed decisions on what help, services and resources they need for themselves or their children
support and guide other service users and families
contribute to the training of service commissioners, providers, planners and policymakers.

Course Content
Topic areas of the course include:

History – the history of the ways disabled people have been seen and treated, history of services, self-advocacy, parents movement and independent living movements.

Education - Quality and inclusive education. Outlines strategies for including Children with disabilities.
Whole Life Planning - Looking at and thinking about what children and adults with disabilities need, solutions for a good life. Includes person centred planning, circles of support, communication, supported living, community building and exploring community resources.

Employment – How people with disabilities, especially those with substantial disabilities, can be enabled to do a job with appropriate training and support.

Policy Development – How decisions on service provision get made and how to influence them both locally and nationally.

Assistive Technology – How technology can help mobility, communication, self care and employment.
Supported Living – What it takes to create a positive home environment for adults with disabilities.

Advocacy – Developing a vision for the future and finding out about: relevant legislation; how to change policies; meeting officials; use of the media; developing alliances; community organising and advocacy organisations.

Course places are free to the participants and have historically been funded by local authorities at approximately £2,000 per participant.

Sharing the Challenge

Listening, Learning, Planning and Creating Together
A course that will give its participants the knowledge and skills to plan better futures for disabled people and their families. Designed for parents who have disabled children over the age of 16 years and for disabled adults.

The Course Programme

The course consists of five two day sessions.
Sharing the Challenge is about building new alliances which will become powerful and make real differences to the future of disabled people. Working separately means that our voices are limited. When these voices are heard collectively, giving united messages of what disabled people, their families and the people who are paid to support them want and need, things will really begin to change for the better. There is a lot to be done. We can do it together.
The course will be as inclusive as possible, with reasonable expenses paid and support provided when needed. This will be arranged on an individual basis. There will be approximately 20 participants, these will be disabled adults and parents of disabled adults. When we use the term disabled, we are including people with learning disabilities, people with sensory impairments and people with physical impairments.
Sharing the Challenge will provide information, training and skill building to participants so that they may gain the knowledge and confidence they need to campaign and advocate for a better future for disabled people in our society. A strong values base of inclusion and disability equality underpins the programme.

Session One - Understanding why things are the way they are now.
During this session we will explore the history of services for disabled people. Sharing some stories we will examine the impact of the way services and support are planned at present has on people’s lives.

Session Two - Exclusion and Inclusion.
During this session we will spend time looking at how discrimination on the grounds of disability has resulted in people being excluded from the heart of their community, and begin to explore ways of planning for a better future - our wish list.

Session Three (Day 1) - Getting the right support.
This session will concentrate on -what sort of help people need at home: how family support should be organised: how do we support people with disabilities to leave the family home and live in a place of their choice with the support they need, we will find out about the growth of the community living movement and hear about new ways of supporting people within the community.

Session Three (Day 2) - Employment and training.
We will hear about ways of supporting people to find work and earn a living, we will learn about the training and support that people need to do this. We will be finding out how people’s benefits can be affected by earnings and about their legal rights within the workplace.

Session Four (Day 1) - Making change happen locally.
This session is about how to influence things locally. People will have a variety of things they want to change in their community, we will learn about how planning and policies happen, become familiar with how meetings work, agendas are agreed, how to work in true partnership with people who make decisions about the services people receive.

Session Four (Day 2) - Making changes at a national level.
We will learn about how to influence Government and get policies adopted to improve things nationally. We will hear personal experience of influencing national policy. What’s important to know about the legislative process? Strategies for political action.

Session Five - Person Centred Planning a vision for the future.
We all think about and plan our lives in different ways. Some people have very clear ideas about what they want and how to achieve it, others take opportunities as they arise. We will spend the two days learning about person centred planning. Person centred planning is a way of helping people who want to make some changes in their life. It provides creative alternatives to the traditional ways of planning. It is now acknowledged that people who use services, their families and those who love and support them are the experts. Person centred planning enables people to take control of their lives. Helping them to identify a desirable future, and developing a strategy to achieve it.

Kindred Spirits

‘Kindred Spirits’ was developed and designed by the North West Training and Development Team (NWTDT) for Sefton in 2002. (Kindred meaning ‘people who are related to each other in some way, and who have a common bond or goal’). A course for people who are working towards desirable futures for disabled children.
The ‘Kindred Spirits’ programme was designed by Lynne Elwell of the NWTDT and was based on learning from the successful Partners in Policymaking and Sharing the Challenge courses.

The course consists of five sessions which will run over ten days. We will then come back together for a day of planning future work. The sessions will be about one month apart. There will be approximately 35 participants, these will be people who work in education, health and social services, and parents of disabled children. When we use the term disabled, we are including people with learning difficulties,

Session One: Understanding why things are the way they are now
Day One: During this session we will explore the history of services both locally and nationally. Sharing some stories we will examine the impact of the way services and support are planned at present has on people’s lives.
Day Two: Understanding and relating to the system
During this session we will begin to spend time mapping out how the services are co-ordinated in at present, sharing examples and stories. We will be building up a picture of the way the system is organised now, who does what, what works well, what would make things work better.

Session Two
Day One: Rites of Passage
This session will begin to look at the milestones in a child’s life and some of the experiences that families have, from sharing the news at the time of diagnosis, through to transition from children’s to adult services. What sort of help and support does the family need at home, why do most families ask for ‘respite’ how can this be organised to give flexibility and choice.
Day Two: Making change happen locally
This session is about how to influence things locally. People will have a variety of things they want to change in their community, we will learn about how planning and policies happen, become familiar with how meetings work, agendas are agreed, how to work in true partnership with each other and the people who make decisions about the services people receive.

Session Three: Education, inclusive learning - before, during, and after school
Day One: During this session we will learn about the latest legislation for disabled children in education, explore practical ways of adapting curriculum’s, how we can give appropriate support to the children and those teaching and supporting them, in order for them to get the best education possible. We will hear about the ways other communities and societies have made inclusive education a reality,
Day Two: Communication and I.T. information technology
We will learn about and explore alternative communication, the latest aids and equipment.

Session Four
Day One: Health Issues
This session will concentrate on keeping children healthy. We will learn about changes the health service, and the challenges this brings for health professionals who work with disabled children and their families.
Many people are trying to improve the way that the social services, health and education authorities can work together for the good of the child. This session will look at the issues raised in developing this.

Session Five: Person Centred Planning
We all think about and plan our lives in different ways. Some people have very clear ideas about what they want and how to achieve it, others take opportunities as they arise. We will spend the two days learning about person centred planning.
At the end of the course we will spend a day evaluating what we have learned and planning how we can take this forward together.

Tomorrow’s Leaders

The Course Programme
A course on leadership development designed for members of the National self advocacy forum. That will give its participants the knowledge and skills to influence policymaking at local and national level.

Tomorrow’s Leaders consists of five sessions, which will run over ten days. Each session will cover a topic and issues that are important to disabled people and their families.

Who is the course for?
There will be approximately 20 Participants they will be: members of the national self-advocacy forum.

Background information
Tomorrow’s Leaders is about building new alliances, which will become powerful and make real differences to the future of disabled people. The course builds on work already done by the National self-advocacy forum, and the Valuing people support team. It grew out of a desire to invest in self- advocate leadership, which in turn will contribute to more effective partnership working. It follows on from the successful leadership development courses facilitated and designed by the NWTDT, such as Partners in Policymaking™, Sharing the Challenge and Kindred Spirits. Working together with Tricia Nicoll from the valuing people support team, Karen Flood and Bill Heron from First Step we will enable the course to be run as a rolling programme in the future. And offer follow up support to the course participants to enable them to put into practice what they learn. Graduates of the course could then make a significant contribution to shaping future policy, as well as using what they had learned in other activities.

Sharing Knowledge

Who is the course for?
There will be approximately 30 Participants they will be: Parents or relatives who have a disabled son/daughter over the age of 14 years. And disabled adults. A good mix of participants would be ten disabled adults, and twenty family members. When we use the term disabled, we are including people with learning disabilities, people with sensory impairments and people with physical impairments. The participants will be representative of people’s ethnic and cultural backgrounds in Bolton.