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making a difference to the lives of people with severe learning disabilities
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England - Know Your Rights

In January 2005 the Government published a report "Improving the Life Chances of Disabled People" which made recommendations across four key areas, including transition to adulthood. It suggests that planning should be focussed on the individual needs of disabled young people, based on smooth provision of support and services during transition and leading to appropriate opportunities and choices in adulthood. However, it can be difficult to find out what is available, and also to be aware of potential opportunities and initiatives that can be utilised to get your son/daughter's needs met. This pack aims to provide some of this information.

Recent Government policy has emphasised equality & inclusion: people with disabilities have the same rights to be fully included within society. However translating policy into practice has created some challenges and it has been acknowledged that people with complex needs, including those with severe learning disabilities and challenging behaviour, have not benefited as much as they should have.

The following section lists the key "tools" that can be used to develop the kind of individualised supports that people with complex needs require.

1. Valuing People: A New Strategy for Learning Disability for the 21st Century (Dept of Health, 2001).

'Valuing People' sets out the Government's strategy for learning disability services, and identified four key principles: rights, independence, choice and inclusion.

A key tool for improving the lives of people with learning disabilities identified within Valuing People is a Person Centred Plan (PCP). Person-centred planning means starting with the individual and putting the supports around them that will enable them to have the life that they want. If you are not familiar with person-centred planning do take time to find out more as this approach is key to your child's needs being met.

Person-centred planning and person-centred approaches

A person-centred approach starts with the individual and puts the supports they need around them to enable them to have a fulfilling life. Person-centred planning tools are flexible, setting no limits to the person's wants, needs and dreams and ensure the focus person is central and in control. In person-centred planning the process, as well as the plan, is owned and controlled by the person (and sometimes their closest family and friends). A person-centred plan is a comprehensive portrait of who the person is and what they want to do with their life, bringing together all of the people who are important to the person including family, friends, neighbours, support workers and other professionals. For more information contact: Families Leading Planning (Tel: 07780 675197 or visit (www.familiesleadingplanning.co.uk) Or your local Valuing People Support Team (www.valuingpeople.gov.uk )

Valuing People also emphasised the importance of transition: "Starting adult life should be a time of opportunity for young people".

2. Our Health, Our Care, Our Say: A New Direction for Community Services (Dept of Health, 2006)

This Adult Social Care White Paper sets out a vision to provide people with good quality social care and NHS services in the communities where they live. It places greater choice and control in the hands of people who use the services. "Our Health, Our Care, Our Say" states that everybody who needs support should be able to have self-directed services and individualised budgets. Self-directed services are directly controlled by the individual from funding received via a direct payment. This is money paid by the local authority directly to a person whom it has assessed as needing community care services. The person then uses the payment to purchase the relevant services required to meet their assessed needs. (see section 8 for further information)

3. The Special Educational Needs (SEN): Code of Practice (DfES, 2001).

This document promotes a consistency of approach to meeting children's special educational needs and places the rights of children with special educational needs at the heart of the process, allowing them to be heard and to take part in decisions about their education. The SEN Code of Practice states that all young people with special educational needs should have a transition planning meeting in Year 9 (age 13-14) of school and every year subsequently. The Code of Practice also states that parents should be treated as partners throughout the transition planning process and the young people themselves should be involved in making decisions and exercising choices.

4. Learning for Living and Work - Learning and Skills Council (LSC)

The Learning and Skills Council is responsible for funding all post-16 education (apart from universities), and education for young people with disabilities up to the age of 25. In a recent report on education opportunities for people with learning disabilities, "Learning for Living and Work", the LSC stated that provision for learners with disabilities should challenge them, provide a sense of achievement, increase personal autonomy and deliver progression to new opportunities and experiences. The LSC will invest new funds to improve education and training for people with learning disabilities and you should ask what action is being taken in your area. (Telephone 0870 900 6800 or visit www.lsc.gov.uk)