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Disabled Children and Their Families a Guide for Donors and Funders Ordinary Lives Disabled Children and Their Families a Guide for Donors and Funders

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Disabled Children and Their Families a Guide for Donors and Funders Ordinary Lives Disabled Children and Their Families a Guide for Donors and Funders Ordinary June 2005 Cathy Langerman lives Eve Worrall Disabled children and their families A guide for donors and funders Ordinary lives Disabled children and their families A guide for donors and funders This report has been supported by The True Colours Trust. Cover photo supplied by Contact a Family. Executive summary The need Role of the public sector Recommendations for donors and funders There are an estimated 700,000 The government plays the primary role disabled children in the UK (5% of all in providing financial support and NPC has found a broad range of children). Disabled children have the services for disabled children and their charities that are carrying out these same needs as other children: to learn, families. However, benefits and services roles effectively. Donors and funders have fun, make friends, play and go on have too many exclusionary criteria can support such charities, and be holiday. However, they face many barriers attached and are not reaching enough instrumental in improving the quality of life that prevent them from doing these families. Recently, central government has for disabled children and their families. things, leading to loneliness and shown an increased commitment to NPC recommends funding a range of frustration. Many disabled children do not supporting disabled children. Given the charities – from those that support get the equipment, therapy or lack of funding and the increasing degree children and families directly, to strategic, communication aids they require. This of local autonomy, this is not translating to national organisations that influence policy can slow their development and limit their local provision. The government should and society. capacity to take part in everyday expand the benefits system and ensure Funders interested in supporting work activities. local implementation of the various acts with disabled children and their families and initiatives it has trumpeted. Almost all disabled children live at are encouraged to contact NPC for home where they are valued and Role of the charitable sector detailed reports on a wide range of loved. Unfortunately, their families are exciting opportunities. more likely to live in poverty and have Given the government’s responsibility, high levels of debt. This is because the the role of charities might appear less cost of raising a disabled child is three obvious; however, it is no less times greater than for a non-disabled important. Charities are often the first child, and parents are often unable to port of call for families. They provide work because of intense care emotional support, information and help requirements. Most families do not in navigating and accessing the range of Disabled children receive any breaks from this care. available services and benefits. As Furthermore, nearly three quarters of providers of services such as short and their families families with a disabled child live in breaks, and leisure and arts projects, unsuitable housing. In addition to the charities often use voluntary donations to are often practical difficulties, families often experiment with new approaches, which experience emotional devastation, anxiety are then rolled out with statutory funding. condemned to and loneliness. Charities also inform service providers around the country about changes to a life of poverty, legislation, new approaches and activities. loneliness and Most importantly, they lobby the government and support disabled sub-standard children and their families to lobby for themselves. services. 1 Born Yesterday Tightly-folded bud, I have wished you something None of the others would: Not the usual stuff About being beautiful, Or running off a spring Of innocence and love – They will all wish you that, And should it prove possible, Well, you’re a lucky girl. But if it shouldn’t, then May you be ordinary; Have, like other women, An average of talents: Not ugly, not good-looking, Nothing uncustomary To pull you off your balance, That, unworkable itself, Stops all the rest from working. In fact, may you be dull – If that is what a skilled, Vigilant, flexible, Unemphasised, enthralled Catching of happiness is called. Philip Larkin1 Contents 1 Executive summary 50 Section 3: Professionals and policy-makers 2 Contents 50 Government context 4 Introduction 50 Legislation 4 The purpose of this report 51 National policy 4 Methodology 52 Local delivery 5 Scope and content 54 Charitable sector 5 Structure 54 Improving services 55 Advocacy 6 Background 6 Defining disabled children 57 Section 4: Society 7 Counting disabled children 57 The role of government 8 Types of impairment or condition 57 The role of the charitable sector 11 Prevalence and trends 59 Conclusion and recommendations 12 Ethnicity and disability 12 Poverty and disability 64 Appendices 13 Places of residence of disabled children 64 Appendix 1: Summary table of data on number of disabled children 14 Section summary: data on disabled children 65 Appendix 2: Relevant legislation 68 Appendix 3: Recent government initiatives 15 Section 1: Children 15 Children’s needs 74 Acknowledgements 15 Friendship, leisure and play 76 References 21 Holidays 21 Equipment, communication and transport 25 Education 28 Section summary: children 29 Section 2: Families 29 Families with disabled children 30 Family needs 30 Financial support 39 Housing and adaptations 42 Short breaks 48 Emotional support 49 Section summary: families 3 Ordinary lives Introduction Introduction The purpose of this report Local fieldwork After developing a broad understanding of the sector, NPC This report is a guide for donors and funders interested in conducted two local case studies: in Liverpool and Tower supporting disabled children and their families. It contains the Hamlets. These areas were selected after considering a number information required to understand the issues and need in this of criteria: area. It addresses all donors, from private individuals, who may be new to the subject, to grant-makers with extensive experience. • Geography and population demographics. The report focuses on: • Type of local authority, i.e. Metropolitan, London Borough, County or Unitary. • The needs of disabled children and their families. • Comprehensive Performance Assessment (CPA)* and star • Responses and activities by the government and charities. ratings†. • The results of these activities. †† • Children’s Trust** and Children’s Fund status. • Funding priorities. Liverpool and Tower Hamlets are deprived areas and have large NPC’s research highlights activities that are most likely to benefit black and minority ethnic (BME) communities. Tower Hamlets disabled children. This allows donors to target resources more received a three star (the best) ranking from the Commission for efficiently and to maximise impact. NPC can provide detailed Social Care Inspection (CSCI). At present, it is implementing a reports on specific organisations and assist in grant-making. Children’s Trust aimed at joining up and improving services for all children, specifically disabled children. Liverpool received only a Methodology one star rating. It is not one of the Children’s Trust pathfinders, There were three stages of research for this report: desk research, but it does have a Children’s Fund. national fieldwork and local fieldwork. NPC met with local experts, including children’s service managers Desk research at the local authority and disabled children’s team members at the Children’s Fund. It also visited numerous charities. The aim was to NPC began its research by reviewing relevant legislation and build a picture of local service provision and identify areas of reports. This included government, policy and regulatory unmet need. documents, and academic papers and research undertaken by some of the larger charities. NPC identified the major players Scope and content within the sector and approached them for its national fieldwork. Because of time limitations and different legal and political National fieldwork frameworks in the various countries of the UK, this report only For its national fieldwork, NPC interviewed 20 individuals from covers England. However, most of the findings are applicable across relevant charities, umbrella bodies, central government the UK and some of the charities cited provide UK-wide services. departments and academia. (For the full list see The knowledge gained through its local research means NPC is Acknowledgements.) able to quickly identify and evaluate the effectiveness of local The purpose of this was two-fold: charities in other areas. • To establish if, and how, the government and voluntary sector The age limit for ‘children’ in this report is 18. However, this is not are addressing the needs of disabled children and their families. always useful because different government departments have different age cut-offs. For example, children’s health services end • To identify gaps and priority areas for intervention. at 18 whereas full-time education stops at 16 or 19. Statutory Because of the high number of charities in this sector requirements state that planning for the transition between child (approximately 300 national groups concerned with specific and adult services should begin when children are age 14. conditions, and over 1,000 local parent groups)2 it was not However, this report does not cover the subject of transition feasible to visit most of them. NPC selected national charities that because it is a large and arguably distinct research area. NPC work with children with any type
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