Background to the Research

• A growing body of literature views services for the disabled community as being the 'poor relation' of personal social services when compared to other user groups.
• In 1992 the Northern Ireland Regional Strategy for Health and Personal Social Services identified the development of services for physically and sensorily disabled people as one of it's 'key areas of concern'. The Social Services Inspectorate's literature review 'Social Support Needs of Physically and Sensorily Disabled Adults' catalogues inadequate and unsuitable provision throughout the UK.
• Current service provision for daytime activity and respite within the Foyle HSS Trust was limited at the time of commencement of this study. The only child specific day care provided within the physical disability programme was a 'Special Needs Group based in the Creggan Day Centre. Child specific respite facilities did not exist within the Foyle HSS Trust's physical disability programme of care. Young disabled people either did not have access to respite facilities or had to use adult facilities.
• This study examined the provision of respite and day activities for young disabled people which included people up to age of 65 i.e both children and adults (but not elderly disabled people). This research project set out to examine consumer views on the day care and respite services currently provided within the Trust and to identify unmet need for both respite and day time activity provision for young disabled people.
  

Research Approach

• Two questionnaires were used, one with the under 16 age group and another with adults aged 16 to 65 years. Respondents aged under 65 years were selected from the SOSCARE database (social services client database) who were disabled and were currently receiving a service from a social worker. Questionnaires were sent to a randomly selected group of 140 SOSCARE adult clients with a physical disability and to the parents of 38 children with a physical disability. A further 100 possible respondents were contacted via the Training and Employment agency. These clients were known to Disablement Employment Advisors as having a physical disability. Day-centres operating within the voluntary sector were also contacted and agreed to give questionnaires to their members.
• Interviews were carried out using a semi-structured interview schedule with clients randomly selected from those respondents who had indicated on their questionnaires that they would like to participate further in the research.
• In addition a number of focus groups were carried out and interviews were completed with staff involved with physically disabled clients.
• Twenty nine parents returned questionnaires in relation to their children. 115 questionnaires were returned by physically disabled adults (under 65 years).
  

Main Findings

Children and Young People

• 59% of the children in the sample were boys and 41% were girls
• 38% were aged between 2 and 5 years, 31% were aged between 6 and 10 years and 24 % were aged between 11 and 16 years. 7% were aged 1 year or under.
• One third of children in the sample had acquired disabilities, 48% had congenital disabilities, and 8% had traumatic disabilities. 10% of parents did not state the nature of their child's disability.
• All parents felt that their child needed more supervision during the day compared to other children of a similar age and that their child needed more supervision at night than an able-bodied child.
• Parents reported that their disabled child had a 'balanced' group of friends. In no instance did a parent state that all their child's friends had similar disabilities to their child.
• Only 41% of parents said there was someone they could leave their child with on a regular basis if they wished to go out for an evening.
• 14% of parents had at some stage left their child and gone on holiday and in all of these cases the child had stayed with another family member.
• 59% of parents said they would use respite facilities if they were available and 17% said that perhaps they would use respite facilities 'but with reservations'.
• Two thirds of parents felt that a residential centre would be the preferred option for respite care while 21% felt that host family care would be the best option provided there were strong vetting procedures and host families were able to get to know the family beforehand. All parents said they did not think a hospital setting was appropriate for children's respite.

Adults

• Returned questionnaires were received from 115 adults. 52% of the sample were disabled women and 48% were disabled men.
• Respondents ages ranged from 16 to 65, with 14% aged 16-25 years, 25% aged 26-35 years, 27% aged 36-45 years, 25% aged 46-55 years and 24% aged 56-65 years.
• 47% of respondents had acquired disabilities, 26% had congenital disabilities, and 17% had traumatic disabilities (10% did not state their disability).
• 62% of the sample respondents lived in urban areas, 27% lived in rural areas and it was not possible to determine the geographical location of 11% of the sample.
• 23% of adults received home help services, 37% had a social worker, 31% had private domestic help, 7% had community nursing services, 4% had a visiting service, 2% had a night sitting service and 2% had the services of a voluntary worker.
• 17% of respondents said that they did not receive home help services but felt that they needed this. 10% said they did not receive a night sitting service but needed it. 10% said they needed day care but did not currently receive it.
• 42% of respondents lived with their spouse, 22% lived with a relative (usually a parent), 16% lived alone.
• Male respondents were most likely to report that their main carer was their spouse (55%) followed by another family member (19%) and 17% had no main carer.
• Female respondents were more likely than male respondents to report no main carer (30%), while 37% were cared for by their spouse and 28% by another family member.
• 23% of adult respondents attended a day centre.
• 71% of respondents thought that current day care provision best suited an elderly disabled population.
• 49% of respondents said they would use respite services if they were available. The reasons given included a break for themselves (41%), to give carers a break (34%), to meet other people (27%), to develop new skills (16%) and to allow carers to have a holiday (10%).

Qualitative Results - Children

• Fourteen interviews were carried out with parents of disabled children with a physical disability.
• All parents interviewed received some type of service for their child from the Trust. In some instances this was only a 'contact service' from a social worker. Parents differed greatly on how regularly they had contact with their social worker. For some parents this was a grievance for others it was the way they wanted their service. The level of social work contact appeared to depend of the level of family support available and the severity of the child's disability.
• A lack of information was consistently reported as being an area of weakness within the Trust. No parent felt they had an accurate idea of what services were available. Some parents assumed that because day care or respite services were never offered by the Trust that these were not available.
• The vast majority of parents were unaware that the Trust provided a day care service for physically disabled children.
• Provision of respite services were felt to be very limited. The majority of parents interviewed had never received a respite service from the Trust. A few parents did not know such a service existed for children.
• Generally parents reported a lack of day care and respite services within Foyle Trust. Many parents felt that the family was the only provider of care and support. Some parents interviewed preferred to care for their children with a minimum of intervention while others were concerned about what they perceived as a lack of services. The availability of provision in rural areas was also an issue.
• Whilst some families were happy with the service they currently received from the Trust, the majority felt that services were minimal. Families also felt that services were inflexible and slow to respond to the changing demands of the family.

Qualitative Results - Adults

• There was a lack of awareness within the disabled community as to what services were available through the Trust. For the vast majority of clients their only contact with Health and Social Services was through a social worker.
• Some clients interviewed had never been in touch with a social worker and for some this was because they were unaware of what social workers could do to assist disabled people.
• There was also a lack of awareness about how best to access services.
• Those clients who were in touch with a social worker often had irregular contacts.
• The majority of clients who had experience of a social work service felt that it was limited.
• The majority of respondents did not see the social worker as being at fault but blamed the system in which they work.
• The general opinion expressed was that services for disabled people in the Trust were next to non-existent. Those services that did exist were felt to be over-subscribed. Most clients were dependent on family members for help and support.
• Getting access to services was seen as too much of 'a fight'.
• A lack of information about services was a major issue and some respondents felt this was disempowering.
• The majority of clients stated that their family was their main support at home. Some families also employed a private home carer to ease the practical burden of care.
• Most respondents (particularly younger adults) felt that the traditional model of day care would not suit them as it was viewed as an activity for the elderly disabled population. Many expressed the need for day care provision for their own age group.
• Older disabled people valued the physiotherapy services provided by the Trust. Older respondents saw both physiotherapy and some form of 'exercise class' as selling points for day care.
• Respondents felt that the opportunities for people with disabilities were extremely limited within the area. There was a general view that there was not enough facilities for them and many referred to barriers and lack of access.
• Generally respondents felt that the physical environment was improving but at a slow pace.
• Most adult respondents, particularly those with acquired disabilities, had given up work as a result of their disability. Many respondents thought that they would be unable to work again because of employers and able-bodied people's attitudes and perceptions of their abilities.