"It always comes down to money" : recent changes in service provision to disabled children, young people and their families in Scotland
Year: 2013
Type: report
Study design: Observational Study
Abstract: This study follows on previous research published by Scotland’s Commissioner for Children and Young People which examined the use of eligibility criteria and assessment tools in services to disabled children and young people in Scottish local authorities (Lancaster 2012). The Stage One research also aimed to identify whether changing assessment procedures were affecting support to these young people. Based on local authority responses, the study found little evidence of tightening eligibility criteria, reduced levels of support or cutbacks in services. In 2013, the Commissioner’s Office funded further research to gather the views of voluntary sector providers and disabled children, young people and their families. The main aim of this study is to examine changes in the availability and accessibility of publicly funded services for these families over the past two years. This research covers local authority services, voluntary sector service providers, health services and professions allied to medicine. It includes children and young people aged 1-20 with a wide range of impairments including mental distress. The research is broadly based on a social model of disability while also taking account of the day-to-day implications of impairment and the significance of personal experience. The research used five different methods: • An on-line survey of voluntary sector providers: 53 valid responses were returned • 10 focus groups with parents, recruited through nine voluntary organisations and one local authority across Scotland. 56 parents/ carers took part • Five focus groups with young disabled people (aged 12- 20), recruited through voluntary organisations mostly in central Scotland. Eighteen took part • A one to one session with a young person (aged 17) who does not use speech • Three case studies, conducted by telephone interview, with parents and a service provider. The study received ethical approval from the University of Strathclyde Ethics Committee. Careful attention was paid to ethical issues throughout. Three limitations can be identified in this research. The young people’s groups did not include participants with as wide a range of abilities as we had anticipated; the parents in the focus groups and case studies were largely self-selecting and, for the most part, the views of service providers are not represented. However, local authorities’ views were presented in the Stage One research. Fifty-three voluntary service organisations, providing publicly funded services to families with disabled children, responded to the survey. Their range of characteristics indicates that they represent a reasonable cross-section of voluntary sector providers in this field. Seventy-nine per cent offered support, advice and information to parents and many also provided short breaks, leisure activities, education support or support for self-advocacy. Almost all (87%) of respondents had experienced a cut in funding or a change in allocation procedures by public funders which reduced their ability to support families. In some cases, this had led to reduced provision or the closure of some projects. About a third spent less on staff training compared to two years ago, while 19% were employing less qualified or experienced staff. Nine respondents had increased charges for their services. Only 27% of respondents said they had not experienced a cut in funding. Service providers were ambivalent about the impact of changes on their services. While 72% of respondents said that disabled children and their families get as good a service from their organisation now as they did two years ago, responses to other questions in the survey suggest that 81% of them think that there has been some deterioration in their provision. More specifically, compared to two years ago, 48% were limiting the number of people using their services, 47% were unable to offer the same level of support to new service users while 45% could not provide the same level of one-to-one support to users generally. About a third of voluntary service providers reported families had to wait longer for their services while a quarter had seen users withdrawn from their services by local authorities in favour of other forms of support. Nevertheless, many voluntary service providers are having difficulty coping with the level of demand for their services as their own budgets are frozen or reduced. They see the erosion of local authority services by funding cuts creating more demand for the voluntary sector. Voluntary providers are finding ways to maintain their services by reconfiguring services, dropping ‘niceties’ such as providing lunches at carers’ meetings, taking a ‘best value’ approach and seeking out new funding sources. But there is concern that maintaining a good quality service does not solve the problem of waiting lists and excluded families. Some respondents see the current cutbacks by local authorities as undermining developments in policy and practice made in recent years. The right to assessment of need may be being undermined in some local authorities. Although only two respondents mentioned self-directed support (SDS) as a current source of their funding, a number of comments indicated an expectation that SDS will be used as a further means to cut budgets. There is evidence of growing unmet need which is not recorded. Service providers are concerned about families being excluded from any funding or support. 32% of respondents have already experienced changes in local authority eligibility criteria affecting access to their services while 23% were aware of changes planned for next year. Many reported that support was now only funded for the most complex cases, when children were at risk or families in crisis. Service providers fear that cuts in public funding for services, coupled with the recent changes to welfare benefits, will increase the stress and isolation experienced by families and disabled children and the consequent risk of marital and family breakdown. Fifty-six parents/family carers took part in 10 focus group held across Scotland. Between them, these 47 women and nine men were looking after 61 disabled children and young people aged between 2 and 20. Parents in every group reported withdrawals of, and reductions in, the support they receive from a range of services - local authority social work and education departments, FE colleges, voluntary organisations, health services and professions allied to medicine - over the last two years. Many families did not have a social worker, some had never had one. Several had experienced their social worker being withdrawn during the last two years. It seems parents were generally not consulted about this and most were unhappy about it. A few had tried unsuccessfully to get a social worker and been told they did not need one or could not have one due to cutbacks or staff shortages. With some notable exceptions, most parents who did have a social worker received a low level of support, often having to ‘chase’ him/her. There was widespread satisfaction with the quality of short breaks services, with various schemes and units being praised. Parents generally wanted longer and/ or more frequent breaks. In some cases allocated hours had been withdrawn, reduced or failed to materialise. There was evidence of short breaks increasingly being used as a form of crisis intervention rather than a preventative service. Previous research has shown that disabled children and young people, like most young people, value opportunities to take part in social and recreational activities and make friends. A huge shortage of suitable social clubs and opportunities for young people was reported, the summer holidays being a particularly challenging time. Parents reported closure of holiday play schemes and a reduced number of hours for the young person to attend social clubs. There were concerns about staff not being trained to work with disabled children. In three areas, charges had been introduced for some social or play activities. Many positive comments were made about the schools the children and young people attended. However, parents also described reductions in the level of support and, in some cases, the quality of education available in some schools. In their view, reduced staffing levels were resulting in inadequate physical care, decreased learning support, less one-toone support including for some children assessed as needing it and a reluctance in some schools to develop Co-ordinated Support Plans. A minority of parents expressed concerns about the health and safety of their children. Three young people had been out of school for six or seven months without satisfactory alternative arrangements in place for their education. These situations were the culmination of complex and protracted difficulties but parents believed that insufficient training and experience among staff was a significant contributory factor. Parents reported reduced availability of occupational therapy, physiotherapy and speech and language therapy. Whereas therapists used to make routine ‘maintenance’ visits to children at school or at home, now they only came out in response to a specific problem or need. There were long waiting lists for appointments and for aids and equipment. Staff shortages were reported in CAMHS, a wheelchair and seating service and among nurses on children’s hospitals. A small number of parents reported an increase in services, sometimes due to an increase in their child’s challenging behaviour or following intervention by politicians they had contacted after experiencing long delays. Only a handful of parents had signed up for direct payments or (in three pilot areas) selfdirected support. While enjoying the flexibility and choice these brought, acting as an employer was felt to be demanding and ‘scary.’ The wider introduction of SDS, from April 2014, was widely seen as a money-saving exercise. Many services had long
Authors: Kirsten Stalker, Charlotte Macdonald, Caroline King, Francis McFaul, Colin Young, Moyra Hawthorn, Louis Patrizio
Language: English
Subfield: Clinical Psychology
Field: Psychology
Domain: Social Sciences
Open Access status: green
OpenAlex ID: W204874108