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ITEM EX6a

SOCIAL & HEALTH CARE SCRUTINY COMMITTEE – 6 DECEMBER 2002

ANALYSIS OF NEED : CHILDREN’S DISABILITY SERVICE

Report by Director for Social & Health Care

Introduction

  1. This report has been prepared at the request of the Executive on 16 July 2002, and the Social & Health Care Scrutiny Committee, on 30 October 2002, in the context of the proposed changes in Social Services provision relating to the Children’s Disability Service.

  2. The timescales required to complete this report means that the audit is not fully comprehensive. It reviews the number of disabled children thought to be living in Oxfordshire, the number of children known to be receiving different services, the number of children on official waiting lists or record of need, and identifies particular areas of unmet need. It draws heavily on the audit of unmet need prepared for the Children’s Care Partnership in October 2001 and the Parents Advisory Group (PAG) survey of respite care in Oxfordshire "Living Rather than just Existing" which was published in February 2002. It uses comparative data from the most recent, 2001, Children in Need (CIN) census which is based on a wide range of children known to Social Services across the country, who accessed service in a representative week in October, to demonstrate how Oxfordshire chooses to focus its services to particular groups of children.

    3. Background Information

  3. 2% of children nationally are estimated to have moderate to severe disabilities. This would suggest that 3,200 children in Oxfordshire aged between 0 – 18 years come into this category.

  4. There are two relevant information systems in Oxfordshire:

    • The SNSS (Special Needs Support System) (Health & Social Services) which records 1,764, 0 – 18 year olds in October 2001. This excludes children with EBD (emotional and behavioural disturbance) and children living in the Henley overlap area.

    • The EMS (Education Management System held by the Local Education Authority) records 2,450 (October 2001) 2 – 16 year olds.

  1. This suggests an overlap between the two systems of approximately 1,500. In addition, there are about 160 children with life limiting illnesses in Oxfordshire, some of whom may be outside both these systems.

  2. The Children’s Care Partnership’s audit of children accessing respite care in its widest sense suggested that 1,019 children were receiving some support from a range of statutory and voluntary agencies. Depersonalised auditing prevented disaggregation of these numbers.

  3. A recent (November 2002) snapshot of disabled children accessing services either directly provided by the Council, or co-provided with other agencies via Service Level Agreements or grant funded suggest that there are:

    4. 17 specialist out of county places either sole funded by Social Services or co-funded with Education.

    6 children receiving full-time/shared care in a residential setting

    16 children in full-time foster placements

    70 children receiving overnight residential respite care

    57 children receiving overnight family based respite care

    20 children receiving day care but not overnight at resource centres

    179 children with allocated home care and/or relief to care packages

    215 play and leisure places provided specifically for disabled children.

    (In addition 2 new integrated after school/holiday playschemes have just been established using New Opportunity Funds start up money: the John Watson Scheme has 17 disabled children on its books and the Blakes Primary School Scheme run by the Children’s Society will offer places to 25 disabled children from January 2003.

  4. There are a number of voluntary and statutory agencies which provide a range of services specifically for disabled children which are not funded by the Council. These range from Hernes House which is run by the Oxfordshire Learning Disability NHS Trust and provides residential respite care to 35 children with profound disabilities and complex health needs to ‘Listen’, a youth group for 24 disabled youngsters in Witney which is run mainly by volunteers and is funded by a local businessman.

  5. All of the services provided for disabled children are under pressure because of high demand. Most employ some form of eligibility criteria in order to ration the available resources so as to ensure they can be accessed by children in the greatest need. Playschemes tend to be allocated on the basis of everyone being offered a little but some schemes cannot cope with children with particularly challenging behaviour or with older, heavier children with severe physical disabilities and/or complex health needs. Access to the more specialist, expensive services such as overnight respite, home care and relief to care is allocated to children and families who are assessed as being in the greatest need. Hernes House, the Social Services Priority Panel and the Children’s Respite Nursing Service are all using the same assessment tool (see Appendix 1) to help allocate services fairly and equitably. Access to services is never determined entirely by numerical survey. The assessment tool is used in conjunction with a descriptive report written with the parents and child, and parents are also invited to complete a Carers’ Assessment so as to give as full a picture as possible.

  6. A number of services operate waiting lists or records of need to reflect children who are eligible for services but who cannot access them because of lack of availability or budget constraints. For example, 4 children are on Summerfield Resource Centre’s record of need.

  7. The four residential respite centres funded by Social Services and Barnardo’s are all struggling to recruit permanent staff. Every effort is being made to meet children’s care packages but managers report that the need for overtime and to use agency staff who may not be familiar with the children limits their ability to offer a flexible service which would meet children and families’ everyday needs.

  8. Recruitment problems are having a more serious effect on the Children’s Home Care Service. Of the 179 children with allocated care packages, 16 children do not have their home care hours fully met although all have some met; 12 children’s relief to care hours are not fully met and 15 children who have been allocated relief to care packages have no service at all. Families whose home care/relief to care needs are not being met are being offered Direct Payments. In some areas of the county and for some children this can produce a satisfactory outcome but not all families wish to go down this route.

  9. The level of demand for specialist, expensive services is so high that the threshold for eligibility for service is also very high. This is true for other statutory services like Hernes House and the Children's Respite Nursing service. Shortfalls in all care tend to have an inevitable knock on effect regarding other services which further strains budgets. Many families say they are deterred from applying for services by being told they will not be eligible or by fearing that this will be the case. Other families, however, do request assessments or are referred by concerned professionals. An audit of the requests coming to the Social Services Priority Panel in the six months June to November 2002 show that:

    • 90 children were discussed by the Panel

    • 40 were new referrals for services

    • 58 were requests for increases to existing packages

    • 54 requests were agreed in full

    • 19 requests were agreed in part, ie care packages were agreed but at a lower level than requested

    • 14 cases were deferred because of a need for more information before decisions could be made

    • 11 cases had their requests rejected

  1. The majority of cases rejected were refused because the threshold of need was too low for eligibility for the services requested; a significant minority of cases were unsuccessful because there was insufficient capacity. This was the case for an important small minority of children who needed large packages of overnight respite because of their sleep disturbance and extremely challenging behaviour. Most of these children have been assessed by the Oxfordshire Learning Disability NHS Trust clinical team as having complex mental health problems.

    2. The Children’s Care Partnership

  2. The Children’s Care Partnership’s audit identified the following groups of children who were either excluded from services or where needs were not properly met.

    • Attention Deficit Hyperactivity Disorder (ADHD) and Aspergers children

    • Challenging behaviour and/or mental health problems needing large team of carers

    • Children/families needing large care packages of support

    • Children deemed ‘not bad enough’ (ie below current thresholds)

    • Children with physical disabilities where residential respite is inappropriate but equipment for family based care is difficult

    • Children with severe/moderate learning difficulties but with a health related need

    • Children excluded from school or withdrawn from school or without further education

    • Children with complex health needs requiring respite nursing at home

    • Children with orthopaedic problems/post orthopaedic surgery

    • Children needing out of hours support at home – especially support overnight

  1. A number of difficulties were identified in meeting these needs, some of which have been referred to already:

    • Lack of provision

    • Budgetary pressures

    • Recruitment of carers

    • Services cannot accommodate needs

    • High thresholds

    • Children do not fit criteria

    • Pressure to respond to crisis

    • Transport difficulties

    • Mix of children within resource

  1. A number of services are not provided equitably across the county. For example, there are more play and leisure places in Oxford, Witney and the Thame/Bicester area than there are in Banbury and the extreme south of the county where services away from the resource centres are only now being developed.

  2. The Children’s Care Partnership has identified children with challenging behaviour as being particularly likely to have their needs either unmet or only partly met. Challenging behaviour is defined as ‘culturally abnormal behaviour of such intensity, frequency or duration that the physical safety of the person or others is likely to be placed in serious jeopardy, or behaviour which is likely to seriously limit use of, or result in the person being denied access to, ordinary community facilities’ (Emerson 1995). Some providers identified 119 children who came into this category. The Children’s Care Partnership audit of this group of children showed:

    • A greater number of boys than girls identified with challenging behaviour (76% of all children identified are boys).

    • A clear bulge of 10 and 11 year olds (33% of all children identified)

    • A significant number of children aged 5 – 7 with challenging behaviour

56 of the children were identified as having severe challenging behaviour and 63 moderate challenging behaviour.

Parents Advisory Group

  1. The 2002 Parents Advisory Group survey looked at this group of children. They distributed their questionnaire to 711 parents and 232 or 33% were returned. The parents who responded reported a wide range of disabilities but the largest group of children (28%) were on the autistic spectrum, 56 parents in the survey used resource centres and of these 79% were in receipt of high Disabled Living Allowance. 70% of those questioned said that they would like to be allocated more time and only 7% were happy with the level of care they were receiving.

  2. The survey clearly revealed the impact upon families of caring for a disabled child. Many respondents made similar comments which enabled the data to be quantified as follows:

    3. 41% of respondents had strained relationships with partner

    52% felt exhausted/tired

    20% bad back

    29% depression/anxiety (one or both partners)

    43% stressed

    39% strained relationships with siblings

    19% ill effect on family (none of these reported challenging behaviour)

    10% reported positive effect on family life

    10% no effect on health

  3. The conclusions of the survey emphasised the need for overnight respite. Many other services were also identified as necessary to contribute to the quality of life of disabled children and their families. For the most challenging children, either they were completely dependent on their parents for every need or for those with very difficult behaviour, and especially for those with disturbed sleep patterns, overnight respite was seen as a lifeline which could prevent family breakdown.

    4. Children in Need Census

  4. The Department of Health have commissioned a national Children in Need Census, which covered two seven day periods in 2000 and 2001.

  5. The 2001 Children in Need census shows that Oxfordshire had developed and established its services towards trying to meet the needs of this group of children and their families. Although Oxfordshire’s average spend on children in need is well below that for the South East shires, it is well above average for children looked after and all disabled children who receive overnight respite come into this category. The census also made it clear that Oxfordshire provides significantly more ‘looked after’ services for disabled children than the national average. Oxfordshire 25%; national average 10%; South East shires 12%.

  6. In the census week in October 2001, Oxfordshire Social Services provided services to 488 disabled children. This was 10% of the total population of children in need who were supported by the county, and 26% of the total children’s budget that week was spent on disabled children. A much larger proportion of this budget was spent on this relatively smaller group of children who received overnight respite. For this reason the County Council supported fewer families than the South East Shire average who were caring for disabled children without using overnight respite: South East shires 15%; Oxfordshire 12%.

    7. Conclusion

  7. In conclusion, there are areas of inadequately met need within the Children’s Disability Service. This applies to a range of service providers and not just within County Council services. Certain groups of children and particular areas of the county are more poorly serviced than others. The commitment to inter-agency working and to developing services which creatively meet identified need is high. While demand for services is considerable and budgetary constraint is tight, some rationing is inevitable. If services are to be more equitable and budgets do not increase, some families care packages will change. Inter-agency use of a shared assessment tool should allow for greater fairness in the system than exists at present. Parents have been vocal in their support for overnight respite provision; this type of service is expensive and of necessity means less money can be spent on other services; there is evidence both in the 2001 Children in Need census and in the Service Redesign that the Council is listening to families’ wishes to maintain all overnight respite services. Ongoing consultation with children and their families will continue to ensure that if more money comes into the system, it will be used to develop services which will respond to current areas of identified need which cannot be met at present.

CHARLES WADDICOR
Director for Social & Health Care

Background Papers: Nil

Contact Officer: Phil Hodgson Tel: (01865) 815833

November 2002

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