Valuing Disabled Children and Young People

Research, policy, and practice

Berni Kelly, Bronagh Byrne

• Publisher: Routledge
• Year: 2018
• Print ISBN:
  9781138687080
• eBook ISBN:
  9781134878734
• Topic: Social Sciences
• Subtopic: Sociology
• Index: Social Sciences

Focusing on contemporary childhood disability issues, and relevant to the lived experiences of disabled children and young people and their families, this book addresses themes such as transition, identity, education, inclusion, and service provision. It also includes insightful contributions on participatory research and practice with disabled children and young people, including an emphasis on capability, voice, and communicative spaces for those with life limiting and more severe levels of impairment.

The contributions to this book are grounded in a commitment to the rights of disabled children and young people, as explicitly recognised under the United Nations Conventions on the Rights of the Child (1989) and Rights of Persons with Disabilities (2006). However, the authors also draw our attention to the detrimental impact of economic austerity and conflict on the extent to which these rights are being realised, encouraging further consideration of issues relating to social justice, inter-dependence, and participation. Addressing the diversity of disabled children's lives across service domains and international contexts, this book provides an evidence base to support the realisation of the rights of disabled children and young people. This book was originally published as a special issue of Child Care in Practice.

“We Could Kid On that This is Going to Benefit the Kids but No, This is about Funding”: Cutbacks in Services to Disabled Children and Young People in Scotland

Kirsten Stalker, Charlotte MacDonald, Caroline King,
Francis McFaul, Colin Young & Moyra Hawthorn

This paper presents research, commissioned by Scotland’s Commissioner for Children and Young People, examining changes in the availability and accessibility of publicly funded services to disabled children, young people and their families between 2011 and 2013. Methods included a survey of voluntary-sector providers and focus groups with family carers and (separately) young disabled people. After outlining the wider context of the economic recession, subsequent reductions in public expenditure in the United Kingdom and the move towards neo-liberalism in social work, the paper focuses mainly on family carers’ views, with some reference also made to the views of voluntary providers. Carers reported widespread reductions in both the level and quality of services they received from social work, education, the voluntary sector, health and professions allied to medicine, with some children not getting the support they had been assessed as needing. There was a move from preventative to crisis work, although some families who appeared to be at “tipping point” were not receiving the help they needed. Tightened eligibility criteria, a rise in unmet need and long waiting lists were also evident. The impact of the cutbacks on families is discussed. It is argued that disabled children’s rights under international conventions, UK law and Scots law are at risk of being undermined. The paper concludes by discussing the implications of the findings for policy and practice.

Introduction

The global economic recession that started in 2008 is the most severe since the Great Depression of the 1930s (Dezhao, n.d.). A key response adopted by many governments, albeit to differing degrees, has been to reduce public expenditure, with both welfare benefits and public services becoming major targets of such change. According to Taylor-Gooby and Stoker (2011, p. 4), in Britain “the most striking element in the reforms is a cumulative, abrupt and substantial programme of public spending cuts and tax increases”. Writing in 2013, Duffy noted that the current Coalition Government in Britain aims to reduce public expenditure by £63.4 billion by 2015 (Duffy, 2013), effectively turning its back on commitments made by its New Labour predecessor to bring the level of public service provision near to that within leading European countries. UK government strategy involves a far-reaching restructuring of public services, with responsibilities of the central state increasingly shifting to the private sector or, where they remain within the public realm, being devolved to local level in terms of decision-making, budgeting and provision (Taylor-Gooby & Stoker, 2011).

Elder-Woodward (2013) identifies three ways in which societies can choose to respond to disadvantage. They can promote a libertarian, free-market economy involving minimal taxation and the provision of only emergency and security services: those who cannot fend for themselves are expected to rely on charity. Alternatively, societies can adopt Rawls’ (1970) Second Principle of Distributive Justice, which allows social and economic inequalities to exist so long as there are some benefits for the poorest. Thirdly, communitarian theories promote the idea of citizens joining together in solidarity, offering support to others on the grounds of their shared humanity rather than “banking” one good turn now in the expectation that it will be returned later. Elder-Woodward (2013, p. 274) argues that the United Kingdom currently adopts a utilitarian stance associated with the second approach, promoting “the greatest good for the greatest number”, leaving little room for unsupported minorities to flourish. Welfare is distributed not only according to individual need but also to individuals’ or groups’ perceived value. Taylor-Gooby and Stoker (2011, p. 11) broadly concur, concluding that the United Kingdom has moved to a position of “inegalitarian liberalism”.

This position is reflected in the recent growth in neo-liberalism and managerialism in some strains of social work ideology, policy and practice at both European level (Diamond & Lodge, 2013; Harlow, Berg, Barry, & Chandler, 2012) and within the United Kingdom (Ferguson & Woodward, 2009). The “best value” approach highlighted in the English White Paper Modernising Local Government (Department of the Environment, Transport and the Regions, 1998) promotes economy, efficiency, effectiveness and quality in public services. In Scotland, best value aims to shift the focus of public services from provider to customer “by delivering services people want to a quality they want and at a cost they can afford” (Scottish Office, 1998, p. 38). Some commentators see this as “not dissonant” with social work values (e.g., Fletcher, 2000, p. 29) although challenging to implement within social work practice due to the latter having a poor public image, vulnerable service users with little political leverage, and complex services and structures that are difficult to evaluate. Ferguson and Woodward (2009) go further, arguing that “best value” is part of the marketisation of care, undermining traditional social work principles and devaluing the professional social work role, resulting in a loss of autonomy for staff. The shift towards care management, for example, involving an increase in bureaucracy and a division between the provision and purchasing of support, has led to a fragmentation of day-to-day tasks, leaving social workers little time for direct work with service users.

Alongside these changes has come an increase in demand for social work services, including children’s and family services. The recession is one significant underlying factor, with rising numbers of people losing their jobs, sometimes compounded by losing their homes due to inability to keep up with mortgage payments: there is evidence that resulting higher stress levels have increased demand for social work support (Pemberton, 2013). Some couples who want to separate cannot afford to do so, possibly contributing to recent increases in child protection referrals (Pemberton, 2013). At the same time, cuts to services have seen a reduction of early intervention work, causing greater need further down the line (Hopwood & Pharaoh, 2012). These authors surveyed eight English local authorities, finding that one, for example, had seen a 70% increase in social work referrals in 18 months.

Although Scotland currently remains part of the United Kingdom, in 1998 “devolution” saw the establishment of a Scottish Parliament with responsibility for developing policy and legislation in a number of areas including social work and health services. While welfare benefits remain a reserved power of the UK government, there have been some attempts within Scotland to “buffer” the impact of UK-wide cuts. In 2010 the Christie Commission on Public Services in Scotland called for a “radical change in the design and delivery of public services … irrespective of the current economic challenges, to tackle the deep rooted social problems that persist in communities across the country” (Christie Commission, 2011, p. viii). Its report highlighted the “virtuous cycle” (2011, p. 6) the Commission would like to see between improving public service effectiveness while simultaneously nurturing stronger and better balanced economic development. However, it found that in reality services were often top down and unresponsive to individual needs and it estimated that 40% of public service expenditure could be avoided if a preventive approach was prioritised. At the same time, the Scottish Government’s total budget was predicted to fall in real terms by over 11% between 2010/11 and 2014/15 (Christie Commission, 2011), indicating that some reduction in public services was inevitable. A freeze on council tax rises over successive years has further reduced local authorities’ income. The government set up a £33 million Scottish Welfare Fund to help people in financial crisis and allocated a further £5.4 million to advice and support services to assist those most affected by cutbacks (Scottish Government, 2013). It is too early to comment on the effectiveness of these measures.

What Does this Mean for Families with Disabled Children?

Cuts in welfare benefits and public services have most impact on the poorest in society (Wood, 2012). Disabled children are significantly more likely to grow up in poverty than non-disabled children (Shahtahmasebi, Emerson, Berridge, & Lancaster, 2011). It has also been argued that the cuts affect disabled people, including those with severe impairments, disproportionately in comparison with the rest of the population because they tend to have lower incomes and higher living costs and many rely on both welfare benefits and public services. Recent research found that 81% of local authorities in England have set care eligibility thresholds at “substantial/critical only”; over one-half have closed a disability support service and 123 have increased charges to service users, some by up to 400% (Wood, 2012). A study funded by the Children’s Commissioner in England explored the experiences of disabled children living in low-income families, collecting the views of 78 children and 17 parents (Larkins et al., 2013). The study concluded that the impact of low income on ability to meet basic needs was often worsened by a poor standard of services, personal support and/or information.

The voluntary organisation Action for Children (2013) conducted a three-year study across the United Kingdom to examine the impact of government spending decisions on the children it works with, many of whom are disabled. They found that service infrastructures were fragmenting with a loss of early intervention work and a move towards dealing only with families in crisis. Of the 650 frontline managers involved in the study, 47% reported increased referrals, while 53% of services faced cuts in 2013 and 79% of staff contracts were due to finish by the end of the spending review period. At the same time, 83% of short breaks services for disabled children reported that demand had increased in the last year.

In 2012, Scotland’s Commissioner for Children and Young People, who is appointed by the Scottish government to promote and safeguard the rights of children and young people, commissioned a survey of local authorities to investigate whether, in their view, families with disabled children in Scotland were having difficulty accessing services due to changing eligibility criteria or assessment tools. The research found little evidence concerning the impact of the changed economic climate on services for disabled children; nor did the findings clearly point to tightening eligibility criteria or reduced levels of support (Lancaster, 2012). Rather, most local authorities reported that services for disabled children had thus far avoided the cuts. However, rising caseloads in most areas, along with no increase in budgets, implied an overall reduction of resource.

Research Aims

Following on from Lancaster’s report, in 2013 Scotland’s Commissioner for Children and Young People commissioned a second study (the subject of this paper) to examine changes in the availability and accessibility of publicly funded services for families with disabled children, this time from the perspectives of voluntary-sector providers, disabled children, young people and their family carers. This paper focuses primarily on carers’ perspectives, but where appropriate also draws on service provider data, in relation to the following research questions set out by the Commissioner’s Office:

1. Have disabled children and young people and their families experienced any changes in the provision or quality of services over the last two years? If so, what sort of changes? Are they for better or worse?

2. For those who have experienced changes in the provision or the quality of services, have those changes affected children and young people and their families; and, if so, in what ways?

3. To what do they attribute such changes?

Methods

Ethical approval for the study was sought from the University of Strathclyde Ethics Committee and written informed consent was later obtained from all the participants.

The views of voluntary-sector organisations, providing publicly funded services to disabled children and young people aged zero to 18 and/or their families, were gathered through an online survey. Four voluntary-sector “umbrella” organisations circulated the survey on our behalf. There were some overlaps in membership between these bodies but we estimated that about 300 voluntary-sector organisations providing services to disabled children and their families were contacted; 53 responses meeting the study inclusion criteria were returned. Seventy-nine per cent (42 organisations) provided support to parents or advice and information: most agencies provided both. Almost all of these providers also offered a range of other services, such as short breaks, leisure facilities, play schemes, educational support or support for self-advocacy. Twenty respondents said they catered for disabled children irrespective of impairment type and the remainder also catered for a range of needs, with only four having a specialised focus.

Ten focus groups were conducted with family carers across Scotland, recruited through voluntary-sector organisations and, in one case, a local authority. The agencies were asked to use the following selection criteria: a mix of mothers and fathers, parents of children with a range of impairments, and some families known by the voluntary organisations to have experienced a change in services over the last two years. Between two and 12 participants attended each group with a total of 56 and an average of five per group. Two facilitators attended each group and carers were asked to respond to questions based on a semi-structured topic guide. With participants’ permission, the discussions were audio-recorded and transcribed.

Five focus groups/group interviews were held with young disabled people aged 12–20,¹ again recruited through voluntary-sector organisations. In all, 18 young people with a variety of physical, sensory and intellectual impairments took part, ranging from a joint interview with two participants to a focus group with five. These are not discussed here but the methods and findings are reported in Stalker et al. (2013).

Analysis of the qualitative data was informed by the approach set out by Braun and Clarke (2006), who identify six stages to thematic analysis: becoming familiar with the data, generating initial coding, searching for themes, reviewing themes, defining and naming themes and producing the report. Attention was paid to responses that differed from the norm to ensure the full range of views and experiences was reflected in the reported findings. Given the short timescale of the study, time did not allow for two researchers to analyse the same dataset. Instead, different team members took responsibility for analysing each dataset and consulted on draft results with one or two colleagues who offered comments and critique. The lead author was then responsible for bringing the different sections together in the final report.

This study had a number of limitations. The organisations that r...

Table of contents

• Cover
• Title Page
• Copyright Page
• Table of Contents
• Citation Information
• Introduction
• “We Could Kid On that This is Going to Benefit the Kids but No, This is about Funding”: Cutbacks in Services to Disabled Children and Young People in Scotland
• Prioritising the Inclusion of Children and Young People with Disabilities in Post-conflict Education Reform
• To be Cared For and to Care: Understanding Theoretical Conceptions of Care as a Framework for Effective Inclusion in Early Childhood Education and Care
• Transition, Inclusion and Partnership: Child-, Parent- and Professional-led Approaches in a European Research Project
• From Individualism to Co-construction and Back Again: Rethinking Research Methodology for Children with Profound and Multiple Learning Disabilities
• Understanding Young Children’s Capabilities: Approaches to Interviews with Young Children Experiencing Disability
• The Participation of Disabled Children and Young People: A Social Justice Perspective
• “Yes They are Listening but Do They Hear Us?” Reflections on the Journey of the Barnardo’s Participation Project
• Narrativising Envisioned Futures by Adolescents with Significant Intellectual Disabilities
• “The Things that are Inside of You are Horrible”: Children and Young Men with Duchenne Muscular Dystrophy Talk about the Impact of Living with a Longterm Condition
• Valuing the Place of Young People with Learning Disabilities in the Arts
• Exploring Transitions with Disabled Young People: Our experiences, Our Rights and Our Views
• Index