Disabled Persons (Independent Living) Bill [HL]

moved AmendmentNo. 1: 1: Clause 1, page 2, line 36, at end insert— ““( ) Independent living support should be provided and arranged in such a way as to ensure that no disabled person has to rely on care and support provided by a child or young person such as may impair the health or wellbeing or educational and leisure opportunities of the child or young person.”” The noble Baroness said: In moving Amendment No. 1, I shall be speaking also to AmendmentsNos. 2, 11 and 12. These amendments have been developed by the Princess Royal Trust for Carers in conjunction with the Disability Rights Commission. Their aim is to clarify the principles that should underpin the delivery under the Bill of support to families and children affected by disability. In strengthening and clarifying the rights of disabled people to independent living, the Bill will have a direct and hugely positive impact on the one in four families in the United Kingdom that include disabled members, and more particularly on the 175,000 children and young people who are relied on by disabled family members for care that would normally be expected of trained adults. We know from the 2001 census that, in that year, 18,000 children aged between five and 15 provided20 hours of care or more a week, which is nearly three hours a day, and that a further 9,000 children provided at least 50 hours a week—that is more than seven hours a day—of whom 800 were under seven years of age. I find that terrifying. The main reason why children and young people find themselves taking on these support responsibilities is that their disabled parents do not get the assessments and help from local authorities to which they are entitled. Amendment No. 1 establishes the principle that, in exercising their duties under the Bill, the responsible bodies—local authorities, health services and their partners—should ensure that independent living support is delivered in such a way that no disabled person has to rely on care or support provided by a child or young person, such as may impair the child or young person’s educational opportunities, health or well-being. Amendment No. 2 amends the definition of ““accessible information”” given in the Bill so that it is clear that it includes information that is suitable for children—whether disabled children or children with disabled siblings or parents. Young carers will, of course, have rights to information and advice under Clause 12 of the Bill. Amendment No. 11 tackles the need for improved joint working and more effective co-ordination between children and adults services to support families affected by disability. It is inspired by the work of the Princess Royal Trust for Carers, the Disabled Parents Network and the Children’s Society in developing an exemplar protocol for children and adults services. A few local authorities already have a protocol that sets out the roles of children and adults services in ensuring that families affected by disability receive appropriate support rather than having to rely on the inappropriate caring role of a child. The amendment specifies that measures towards this must be included in the local independent living strategies. This complements other measures in the Bill that support families. Amendment No. 12 specifies that registers of disabled persons should include the details of any carers whom a person may have to enable better forward planning and to facilitate identification of carers who may have support needs. I hope that the noble Lord, Lord Ashley, will be able to accept the amendments in the group and thus enhance the delivery of support to families and friends affected by disability. I beg to move.