Archived decisions
Draft report for Hampshire County Council - proposed Scrutiny Review of Respite, Palliative and Carer Services for Children
Introduction
This paper offers a scoping of the proposed review of respite services for families of children with severe disabilities. There is currently no centralised service so that parents and carers need to speak to either Children's Services or their GP/consultant in order to arrange care for children. Moreover, there is currently no population-based needs assessment to identify the level of care that children require. How care is currently coordinated through the network of statutory agencies through the application of eligibility criteria for respite and the relationship between Health and Hampshire County Council is therefore of great concern to Members.
Rationale
1 national policy background
Concern and resulting action on these issues has been gradually gathering pace within Children's and Disability policy nationally. From a meagre start of just four mentions of disability issues within the Every Child Matters Green Paper in 2003 (ECM), we now have the Kraft and Killen Independent Report and the joint Treasury/Dept of Health report, Aiming high for disabled children, both released in May 2007 focus entirely on the more rapid development and sustainability of these services to children with disabilities and their families. In addition the Commission for Social Care Inspection report (CSCI 2007) in April comments that of children receiving services `an increasing number (29,700) are children with disabilities, and that trend will continue.' Public concern was also reflected in a (now failed) Private Members Bill this year which proposed a right to respite breaks for parents of children with disabilities.
ECM nonetheless reset the agenda overall for children's services and focused on
o clinical screening e.g. for deafness and other diagnosis in the early years
o developing Special Educational Needs (SEN) & disability provision in mainstream schools - and the extension of the Disability Discrimination Act to education
o improving Mental Health provision including for children with learning disabilities as very little is on offer for them
o increasing the number of people with disabilities in the children's workforce.
Following ECM the Early Support project was begun as part of the Sure Start programme for 0-5year olds, of which the development of children's centres to 2010 is the current key mechanism to deliver targeted support to families. This project is ongoing with new resources announced this year to enable more local authorities to take up this approach as the acknowledged best practice for disabled children 0-3 years old. The approach is summed up in Together from the Start guidance for professionals from the Depts of Health and Education & Skills (2003). Emphasis is on key worker coordination and early intervention regardless of the clarity or otherwise of the actual condition or impairment of the child, as well as integral family-centred planning.
This work was further developed through the National Service Framework for Children, Young People and Maternity Services in 2004. Its standard 8 says:
"children and young people who are disabled or who have complex health needs receive co-ordinated, high quality child and family-centred services which are based on assessed needs, which promote social inclusion and, where possible, which enable them and their families to live ordinary lives".
This provided further impetus to the Early Support project.
The national strategy, Improving the life chances of disabled people (2005) from the Cabinet office then drew together the various strands in a comprehensive chapter on early years and family support. It made the important link between disability and child poverty and recommended individual budgets to help families early on and to stop the skew of spending towards expensive later provision rather than low cost early intervention
.
Despite the positive developments (children's centres, the `Together From The Start' guidance to professionals, more early years places, Family Fund grants, local Special Educational Needs Coordinators (SENCOs), a national helpline), the strategy highlighted issues of access of families with children with disabilities to this provision. It sees family support is patchy: `around one-third of parents with disabled children wait over a year for a short break service. And families with very young children, children with complex needs, "challenging" behaviour and Autistic Spectrum Disorders, as well as those from minority ethnic communities, are less likely to have short breaks' (p94). It also raised concerns about provider issues such as workforce limitations in genuinely ensuring access to mainstream services such as education. The Early Years workforce and its development was emphasised alongside the lack of local detailed data especially regarding unmet need and family input to needs assessment. The strategy recommends:
`Local authorities, PCTs and, from their inception, Children's Trusts should work together and with their partners to strategically commission services for disabled children, including early years and the transition into school, with a view to meeting the NSF standards. This process should take full account of the needs of all disabled children in their area, including those who do not meet current eligibility criteria.' (p103)
These issues are also raised similarly in the latest CSCI report (2007).
The White Paper Our Health, Our Care, Our Say not only recognised that `additional investment is needed to improve end of life care' but also stated that:
Standard 8 of the children's National Service Framework requires high quality palliative care to be available to all children and young people who need it. It is to be co-ordinated by a network of agencies [...] to ensure provision takes account of the child or young person's and their family's physical, emotional, cultural and practical needs in a way that promotes choice, independence, creativity and quality of life [...] Community-led palliative care, available locally should be at the heart of all the provision to children and young people.' (Department of Health 2006)
Finally in the last few months a stream of further developments has highlighted the issues. The clinical case for improvement was set out by the National Clinical director (Shribma 2007), who called for children's networks of palliative care, prevention via children's centres and for children's community nursing teams. Her report did not include a plan of action on these issues.
The Craft and Killen Independent Report which provides a review of the long term sustainability of children's palliative care, following consultation in 2006, was published on 17 May 2007. It is trenchantly critical of the provision of services and emphasises the need for partnership and joined up thinking, especially in commissioning and planning services, and in achieving consistency and a focus through proper performance targets. The role of the key worker is emphasised and the importance of parental involvement. Consultation responses made the point that services for children with disabilities while becoming more complex are also converging:
`"palliative care" is nowadays about enhancement of quality of life for the child and support for the family, as well as including the management of distressing symptoms and provision of respite and care through death and bereavement. This means that a strong overlap exists between the needs of those children and young people with disabilities and/or complex health needs and those requiring "palliative care".' (from Summary of responses to consultation - no page nos.)
The final report of the Treasury/DfES review of children's services "Aiming high for disabled children: better support for families", was launched 21 May 2007 announcing £340m in the next spending period for disabled children's services, the bulk targeted at short breaks. Ministers wrote to local authorities saying the review and the action proposed provides parents:
`with the information they need, a real voice in the design and delivery of services, and a joint planning process that keeps them at the heart of decision making about their child. It also provides a framework to structure the activity of lead professionals who are taking on a key worker role with families - a role that we know makes a real difference to their lives.'
The review found early intervention was not happening on a consistent basis across the country, partly because of a lack of research into costs and benefits.
So the Early Support project is being extended. Ministers in Dept of Health announced on 30 May 2007 that all councils should adopt the early intervention programme for children with disabilities this year and would from now on be monitored on this. This follows extremely positive evaluation of the Early Support (ES) work. The researchers (from University of Manchester & University of Central Lancashire) found:
o `significant demonstrable improvement in coordination of support, multi-agency planning, smoother processes of identification, referral and initial assessment'
o `parental recognition of quality'
but also
o the problems of reconciling universal and targeted services -
`The extent to which ES should be regarded as a universal and/or targeted provision was a problem across [authorities], who varied in the extent to which they operated clear eligibility criteria for a service. In some cases a distinction was made between `full' ES (i.e. including key worker provision) and `second tier' ES (which may be only materials provision, and/or referral to a particular agency). Clarity over eligibility criteria and decision-making over type of service provision remains a crucial issue that is largely unresolved ... in the implementation of ES. The key struggle lies in ensuring equal and universal access whilst grappling with the realities of different and targeted provision within finite resources. (pXXVI)
o `variation in eligibility criteria, decision-making processes, transparency to families'.
(Source: Young and Temple 2006)
This short review highlights the following:
o recent growing emphasis on this area
o importance of clear arrangements for integrated services, especially a key worker system
o importance of clear strategy and commissioning across agencies
o workforce issues including a culture of joint working
o concerns over levels of (unmet) need and assessment process
o growing complexity of needs
o access inequalities
2 local policy background
this needs more input from HCC and NHS people
Reflecting the national picture, provision is seen as uneven across the county with differential provision across the former different PCT areas, for example less provision in the SE. At the same time the County has been involved in innovative partnership with the NHS for example regarding the Firvale respite facility which created a new centre for children with severe and profound learning disabilities and/or complex health care needs. The £2m centre joins services from the County Council's Children's Services and the health authority in a unique unit, the first of its kind in the county, offering five social care beds and four health care ones.
There is a complex legacy of funding multiple providers in the voluntary sector for services that respond to the many differing needs of children with disabilities (see Pinpoint listing). Recently a working group involving parents and carers as well as providers and council staff has begun a review of commissioning strategy to address the plethora of providers currently involved. It aims to report initially in July 2007 on a plan to take the County to 2015. The group's concerns include mapping not only provision but accurately mapping need in terms of numbers of children and families. This is also a concern of the NHS locally. The impact of eligibility criteria on equity and on BME communities is also seen as important. Shifting to a commissioning approach from a provider approach is a concern of the NHS, whereas the Council retains both functions.
3 other scrutiny work in this area
In 2002 a Respite Care Commission in Lambeth found in relation to children that carers of children with disabilities were being left out of respite care facilities. In addition they were concerned more generally over:
o GPs as gatekeepers to respite care
o nomenclature - `carers breaks and services' is preferable to `respite care' to encourage access
o improving access and relevance to BME groups
o funding allocation process rather than overall amount of funds
o need for transparent system for applying for and being assessed/informed re applications for breaks/respite
o need more effort to communicate criteria clearly to carers
o training for staff in phone work with carers to ensure respect
o quality issues re agency staff where continuity for some and flexibility for others are missing especially in homecare
They found positive evidence of a voucher scheme for self purchase of respite
A LB Harrow review (2003) of carers services included children's respite although did not highlight these services especially in its findings. The report suggests more flexibility is required including outreach to families, as well as better communication with carers. (see http://www.harrow.gov.uk/ccm/cms-service/stream/asset/?asset_id=92715 )
Children's services formed part of the Norfolk County Council work on Death and Dying in 2005 (see http://www.norfolk.gov.uk/consumption/idcplg?IdcService=SS_GET_PAGE&ssDocName=NCC041137&ssSourceNodeId=&ssTargetNodeId=3539) . This recommended a joint lead across social services, children's services and the NHS and reviewing funding structures to enable more specialist services to be provided including for children. Overall in their discussions with the public on the review `children and young people'' was a top theme for more work in addressing palliative care. The review notes that more children and young people than adults receive complex palliative care at home and die at home. The report highlights a local good practice scheme funded across health and social care for a key worker for children 0-6 with complex health needs. It also highlights the lack of specialist consultant resources in health for children's palliative care in the county.
A health scrutiny report in Wakefield in March 2007 raised issues of close joint working and recommended that:
`the Trust and the Local Authority carry out an audit of current provision, together with intelligence from all statutory agencies and voluntary support groups on those families known to them but who currently do not receive a service, in order to estimate the shortfall between current provision and unmet need'
4 good practice benchmarks/issues
Audit Commission study (2003) suggested the following key principles for services for disabled children:
· Service planning, partnerships and reviews include mainstream services (leisure, housing, transport) as well as the three specialist services (education, health, social services).
· Services to individuals flow from an initial multi-agency assessment of individual and family needs, and are integrated in a way that makes sense to the family (for example through keyworking).
· Disabled children, young people and families are involved in assessment and planning at all levels.
· Service providers have clear arrangements in place to find out whether users are satisfied that their needs are being met, and with the quality of services they receive.
· Service users know what services are available, and how to get them, and can access services and information via key workers or single points of access.
· Service users can access appropriately skilled staff and fit-for-purpose equipment in the right place, and at the right time.
· Staff respect service users' right to clear, jargon-free, two-way communication.
· Services work flexibly to ensure that people from minority communities have equal access to them: know about them, know what they are entitled to, and want to access them. Services are delivered in a way that respects the cultural and religious sensitivities of service users. Interpreters are readily available, and family members are not used as interpreters.
· Services recognise the particular impact of waiting for support or treatment on children's development, and ensure timely intervention.
· Developmental stages, physical changes, and age-related preferences are taken into account when designing, planning and delivering services to disabled children and young people.
The policy review above still supports these principles and they provide a solid benchmark for review. Specific policy initiatives that are aimed at meeting the principles include:
o key workers to combat patchiness and access issues plus rapid (single) assessment and getting equipment sorted etc
o individual budgets for speed and flexibility and for local responsive services led by parents
o commissioning strategy and partnership/integration
o performance management and targets for this area
o focus on whole family for example siblings not simply clinical need of children
o developing the workforce in mainstream services to enable inclusion of children with disabilities for example in childcare
o community nursing for children as a special service to cope with changing needs where palliative care and complex needs overlap
o children's centres and the prevention agenda (linked to poverty and overall children and early years policy)
Current Services
1 local provision
needs more detail or listing services
Family Support Services of £6.5m in budget 06/07. 19% of families supported use direct payments. This seems a good proportion - for example in Wiltshire the disability strategy has a target of 13% by 2009 - although accessing up-to-date data from other authorities on family services specifically is difficult.
The number of disabled children living with their families or independently receiving support as a percentage of the estimated total population of disabled children in the council area is currently 4%, which is lower than the Council's statistical neighbours and England average at 6%. At two-thirds of the national level of support this may suggest a level of unmet need locally, dependent on actual numbers of children with disabilities and any local differences from a national profile.
Joint respite care arrangements are in place through the Family Link Scheme, Rose Road, Firvale and Merrydale. A joint equipment store is being established by the PCT and Children's Services Department. Task groups have been established to work out the logistics of bringing together all the current equipment and to create a pooled budget for future provision. The target date for all equipment to be on site and catalogued is October 2007
Access to childcare remains a gap. Pilot multi-agency children with disability virtual teams are being developed. Reasons for out-county placements suggest that this is often about therapy provision and the need for respite/residential facilities so that this needs further consideration regarding Hampshire based resources.
(source for data in this section: Hampshire C/YP Strategic Partnership 2007 self evaluation on children's plan)
2 service performance
JAR or other material needed re performance indicators - JAR draft report 21 June 2007
The recent Joint Area Review (JAR) focused on vulnerable children including those with disabilities and concluded the council's performance is good and some services are outstanding. Early JAR more detailed feedback focuses on patchiness of services, sense of parents struggle to access, need for children's involvement to be improved. Also acknowledges need for more development with the PCT such as on common assessment. It also highlights need to develop joint commissioning and the complementary needs analysis.
Hampshire is recognised nationally for excellent SEN work and provision.
Critical issues for review
1 summary of issues
While improvement in medicine has reduced disability and impairment for some, it has also increased survival rates for children severely impaired. Taken together this seems to indicate a constant figure of need at around 3% of children, but these comprise children with more, and more complex, needs.
This requires highly flexible and yet specialised services, mostly delivered in the home, backed up by substantial support to carers/parents such as short breaks or respite. These needs have led to a complex array of offerings mostly in the voluntary sector and funded by statutory services, with a mix of eligibility criteria. The policy demands now are to find a more coherent and sustainable way forward that meets what parents and children need. Core issues in doing this are:
o early intervention approaches
o key worker support
o integrated commissioning based on good data and mapping of needs
o flexible funding
o transparent criteria for eligibility
2 proposed outcomes for review
very draft ideas here!
· Enhance partnership working & improve liaison between carers and other agencies supporting children and parents/carers/families
· Enhance the quality of care provided to children when it is needed
· Enable children to live at home to the fullest extent possible
· Strengthen early intervention approaches
· Help clarify priorities for both immediate action and longer term commissioning strategy across health and social care, especially focusing on :
· quantifying need
· transparency of eligibility criteria
· communication with parents and children
· More involvement of parents and children in the process of service planning and provision
Planning the review
1 who to involve
The review needs to engage members from not only Health Scrutiny Committee but also the Children's and Young Person's Policy Review Committee.
Officer input needs to encompass commissioners of children's services as well as the Council's provider services within Education and related services.
Health bodies' input needs to come from the PCT as commissioner but also from a range of providers of these complex services, especially those in the voluntary and community sector.
Members will be keen to gain the experience and input of parents and where possible of children and young people, through visits as well as in meetings.
2 key questions to explore
again these are early suggestions
· what early intervention approaches are being used currently? how can these be strengthened?
· how far is a key worker system in place and is it helping?
· what steps are being taken to measure and quantify need across the county?
· how are parents and children being involved in planning and providing services? is this effective?
· what is needed to achieve coherent joint commissioning for these services?
3 resources/materials for members
Hampshire JAR report
Craft and Killen Independent review report 2007
References
Audit Commission 2003 Services for disabled children: A review of services for disabled children and their families, London: Audit Commission available from http://www.audit-commission.gov.uk/reports/NATIONAL-REPORT.asp?CategoryID=&ProdID=EE944EBA-B414-4d76-903E-A4CA0E304989
Commission for Social Care Inspection 2007 Children's services: CSCI findings 2004-2007, London: CSCI
Craft, A. and Killen, S. 2007 Palliative care services for children and young people in England: an independent review for the Secretary of State for Health, London: Department of Health, available at http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_074459
Dept of Health and Dept for Education and Skills 2003 Together from the Start: Practical Guidance for Professionals Working with Disabled Children (birth to third birthday) and their Families, London: DfES available from http://www.everychildmatters.gov.uk/earlyyears/earlysupport/
Dept of Health 2006 Our health, our care, our say. London: The Stationery Office.
Dept of Health 2007 Summary of responses to consultation on palliative care services for children, April, available at: http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_074459
Hampshire Children and Young People's Strategic Partnership 2007 Children and Young People's Plan Evaluation, Hampshire County Council
LB Lambeth 2002 Report of the Respite Care Commission, June.
Shribma, S. 2007 Making it Better: For Children and Young People, Clinical Case for Change, London: Department of Health, February.
Young, A and Temple, B. 2006 Early Support: an evaluation of phase 3, available at : http://www.dfes.gov.uk/research/programmeofresearch/projectinformation.cfm?projectid=14203&resultspage=1
S Marsh
EAT Adviser
June 2007