Item 12

Children and Young People Select Committee

2 July 2008

Scrutiny of Short Breaks, Palliative Care and Carer Services for Children with Severe Disabilities

Feedback from Winchester Guildhall Event, 10 March 2008

Contact: Emma Gordon 7567

1. Introduction

1.1 In late 2007, Hampshire County Council's Children and Young People Select Committee identified the topic of short breaks for children with severe disabilities for scrutiny within their 2008 work programme.

1.2 Initial research into the topic showed that the coordination of care in Hampshire was particularly complex, with a network of statutory and voluntary agencies providing care, a lack of clarity over eligibility criteria for short breaks, and a developing relationship between Health and Hampshire County Council all appearing as key areas of interest. No centralised service existed to coordinate care and, at that point, no population-based needs assessment for the provision of short breaks in Hampshire existed. The management of short breaks was therefore of great concern to Members.

1.3 In order to investigate the issues relating to short breaks in greater depth, the Children and Young People Select Committee decided to hold a workshop in March 2008 in order to allow the full range of stakeholders who provide and receive short break services to raise points of concern and identify priorities for improvement throughout 2008.

1.4 The Committee was privileged to have the support of Steve Broach, Campaign Manager for Every Disabled Child Matters who provided the keynote address to the event. Steve raised some critical points for action and ongoing monitoring which are addressed in section 3 of this report.

1.5 The Chairman of the Children and Young People Select Committee is grateful to Steve Broach and to parent Diane Fenwick, and those individuals who volunteered to assist in facilitating the workshop and compiling invaluable feedback.

1.6 A second workshop is due to be held in early 2009 to gauge progress with the issues identified at the 2008 workshop.

1.7 It is important to note the emergence of the Aiming High for Disabled Children agenda at the time of the Select Committee's workshop. In January 2008, Hampshire County Council's Executive Member for Children and Families commenced consultations relating to the tendering for some existing overnight short break services for disabled children in Hampshire. These consultations encompassed the broader range of development issues included in the Aiming High programme in the light of Government guidance and the announcement of additional grants from 2009/10 to support development of services. The Select Committee's consideration of short break services has naturally broadened to include many themes of the Aiming High agenda.

2. Key lines of enquiry

2.1 Members of the Children and Young People Select Committee identified the following as being of particular interest when gathering stakeholders' views of the key issues relating to short break services:

2.2 Through a combination of general discussion and group work focusing on key questions, the feedback at Annexe A was generated. A summary of the key issues arising from this feedback is provided in section 6 of this report.

3. Introduction by Steve Broach of Every Disabled Child Matters

3.1 In his keynote address to the conference, Steve Broach provided an excellent overview of the national context for short break services and highlighted several key impact areas for Hampshire. Steve's slides can be found at Annexe B. Steve strongly endorsed the CYP Select Committee's decision to scrutinise short breaks at this point and emphasized the need to undertake ongoing scrutiny in the areas described in paragraphs 3.2-3.13 below.

3.2 Steve highlighted the fact that the number of disabled children in the UK aged 0-16 had grown significantly since 1975, but that services supporting their needs are still highly variable, insufficiently joined up and limited. The key issues requiring attention nationally include:

3.3 Families with disabled children often experience a range of pressures and challenges, as the following statistics show. This accentuates the need to provide opportunities for parents and carers to take well-earned breaks from caring duties, and for children to participate in enjoyable and valuable experiences:

3.4 Every Disabled Child Matters is promoting proposals to update legislation relating to short breaks in order to grant families a legal right to these services.

3.5 At the local level, EDCM is also interested to see how services for disabled children and their families are being addressed within local performance management arrangements. Steve anticipated that indicators relating to parental satisfaction with services for disabled children would be negotiated within Local Area Agreements. The reasons for including or excluding such indicators would be helpful to understand at local level.

3.6 In terms of resources, the government has allocated £370m over 3 years to local authorities for short breaks. Hampshire's share of this funding amounts to approximately £8.2m over this period. The funding is intended chiefly for the development of infrastructure to support existing short break provision: improved transportation to facilitate access to these services is one such example. Hampshire's allocation in year 1 (2008-9) is £70,000. In many areas, this `seed funding' is likely to be used to undertake audits of existing need in order to support targeted development activity in years 2 and 3 of the funding.

3.7 The funding should help to alleviate tensions between local authorities and primary care trusts in delivering short break services. Steve mentioned that approximately £200m had also been awarded to Health. However, whereas local authority money has been ringfenced for spending on short breaks, Health money is not ringfenced and spending will be determined locally. Steve was keen that senior Health officials consider disabled children as a priority when deciding how local money should be spent, and added that the Every Disabled Child Matters campaign would be interested to know how local decisions were being made on this front.

3.8 Steve acknowledged Hampshire County Council's recent signing of EDCM's Local Authority Charter - one of 59 out of 150 local authorities to have signed up. A similar Charter for Health had attracted 22 Primary Care Trust signatories, although the Hampshire PCT was not party to the Charter at the time of the conference.

3.9 Questions from stakeholders highlighted various issues, including the confusion resulting from a lack of standard definition for disability. Steve recommended the use of the definitions outlined in the Disability Discrimination Act, although also urged a pragmatic application of the definitions in order to focus on children whose disability is evident, or where there are complex needs.

3.10 Tensions in balancing the needs of individuals against the need to maintain a strategic view of overall need within an area were also highlighted.

3.11 In response to concerns expressed over the lack of personnel currently available to undertake assessments of need, Steve suggested that the £70k Government funding in 2008 for short breaks could usefully be spent on establishing a picture of need in order to ascertain how the workforce may need to be developed in future years with ongoing funding.

3.12 Finally, Steve acknowledged the key role played by voluntary and community organisations in delivery the short breaks agenda. As local authorities take on more of a commissioning role, voluntary organisations and the private sector will become vital partners in delivering short breaks against a high level of need.

3.13 In terms of possible immediate action to be taken at local level, EDCM suggests the following:

4. Presentation by the Parents Influencing Disabled Children's Services Group

4.1 Diane Fenwick - a parent of a disabled child and member of the abovementioned group - provided a valuable insight into her experience of caring for a disabled child and the importance of short break services for her family. In addressing the key issues for parents in the short breaks agenda, the following issues were highlighted:

5. Video by Connexions in conjunction with Salterns and Oak Lodge Schools - the Children's view

5.1 In this film, presented by pupils from Salterns and Oak Lodge schools, the following points were highlighted as being particularly important for stakeholders to consider in the ongoing development of short break services in Hampshire:

6. Key issues arising from event

6.1 Full feedback from the workshops can be found at Annexe A of this report. However, the following sections provide a summary of the key points raised by stakeholders and in presentations throughout the day.

6.2 Current provision of care:

6.3 Eligibility:

6.4 Relationship between local authorities and Health:

6.5 Population-based needs-assessment:

6.6 Development of the key worker/lead professional role:

6.7 Strengthening early intervention:

6.8 Facilitating access to services for children and their families:

6.9 Other issues

7. Key points for scrutiny

7.1 As outlined in section 2 of this report, Members of the Children and Young People Select Committee identified three particular areas of interest in relation to the short breaks agenda. The key findings of their work to date are therefore summarised below under these three headings.

7.2 Development of the Key Worker/Lead Professional role

7.3 Measures being employed to strengthen early intervention

7.4 Measures being employed to facilitate access to services for children and their families

7.5 Other issues and points for consideration

8. Conclusions, Recommendations and Action Points

8.1 The Children and Young People Select Committee is aware that the development of services for disabled children and their families is a top priority for Hampshire County Council and its partners. A major programme of consultation on short break services by HCC and the Hampshire PCT was undertaken during March and April 2008. Feedback from this consultation is being collected and an initial summary of stakeholder responses was presented to the Executive Member for Children and Families on 22 May 2008. Many of the issues arising in this consultation reinforce those identified in evidence collected at the Children and Young People Select Committee's workshops.

8.2 Whilst the Select Committee acknowledges that much is being done to address current issues with short break services - and that time is needed for HCC and its partners to respond to the new requirements and demands on services - Members have identified several issues within their specific terms of reference relating to the short breaks agenda that require immediate or ongoing consideration. Sections 8.3-8.5 provide this detail.

8.3 Recommendations

8.4 Points for ongoing monitoring

8.5 Action points

8.5.1 In addition to monitoring the progress of the topics outlined in section 8.4 of this report, the Children and Young People Select Committee hopes to visit some of Hampshire's short breaks providers throughout 2008 in order to gain first hand experience of the work being undertaken in Hampshire to improve services for disabled children and their families. Details of these visits will be published shortly on the HCC Scrutiny website (www.hants.gov.uk/scrutiny).

Annexe A

1. Feedback from Discussion groups

1.1 General discussion regarding the existing strengths, weaknesses, opportunities and threats present in the provision and management of short break services highlighted the following key points for ongoing monitoring and scrutiny.

Strengths:

· Culture:

· Hampshire is open to change

· There is genuine commitment and good working relationships amongst all stakeholders to make things work well

· Good shared focus on disability combining strategy, legislation and resources

· Partners generally have a clear understanding of what parents need

· Hampshire is already ahead of the game in many ways

· Resources:

· The skills base in Hampshire is strong

· IT systems are in place in Hampshire

· A good mix of services already exists

· There is already good provision for children with pre-formed and complex needs

· Children's Centres and Extended Schools present good opportunities for joined up working (these are also viewed as opportunities to realise further benefit)

· Services are already available which do not require assessments to access them.

· Naomi House

· Special schools

· FAB Team

· Financial:

· Direct Payments (although this is also seen as a weakness in some respects)

· Partnership working:

· Emerging partnerships with the voluntary sector

· Joint appointments

· Common Assessment Framework

· Parents/carers

· Freedoms for parents/carers to use allocated 12 days of short breaks across different units

Weaknesses:

· Eligibility criteria and assessment:

· The definition of disability is different across agencies. This makes it difficult to agree eligibility criteria, thresholds and priorities

· Transport: there is no clear and published eligibility criteria; there is no equitable assessment of need

· No fast-tracking of those most at risk

· Resources - Geographical spread of services:

· Services are not equitable across the county - a post-code lottery exists

· There is no data to show the number and location of children requiring short break services and so we cannot know if capacity matches real demand and whether services are being provided in the correct locations.

· Provision in South East highlighted as particularly weak

· There are issues in reaching the population in socially deprived and isolated areas.

· Resources - capacity of workforce and mechanisms:

· Lack of workforce capacity to deliver

· Voluntary sector finds it difficult to engage with 49 different Children's Centres

· Immaturity of the commissioning process

· Lack of clarity over head offices

· No health network for learning disability

· Financial:

· No sustainable funding

· Multi-agency funding agreements can be difficult to achieve

· Lack of a social care model with targeted service for complex needs

· Health funding for short breaks is not ring-fenced

· Direct Payments - lack of assessments and finding the needed resources

· Data and information:

· Pre-school children are not counted or represented due to a lack of information/data

· Health data is unavailable

· Collective performance data unavailable

· Addressing need:

· Problems at `transition' phase: services are not joined up.

· Learning disabilities are not assessed until a child leaves school

· Inappropriate placing of challenging behaviour - a special unit is needed

· Currently difficult to facilitate disabled children's access to leisure

· Lack of flexibility over short break services - for example, there is currently no recognition that support needs to cover the whole school day

· Reactive rather than proactive approach to the management of short breaks

· Disparity in provision for different age groups

Opportunities:

· Resources - making more effective use of existing resources and mechanisms:

· Children's Centres and Extended Schools - universal services

· Integrated care pathways

· Locality Teams

· Improved working with all PCTs for short breaks care

· Some universal services i.e. Youth Service could be provided without a needs assessment

· Osbourne School could be developed

· Merridale could adapt into medium term beds

· Joint Commissioning

· Resources - capacity of workforce:

· Develop the skilled workforce (Children's Workforce Development Council)

· Involving parents initiatives that can be developed

· Development of the Lead Professional role

· Creation of joint teams

· Financial:

· Direct payments and self-directed support

· Direct payments through Common Assessment Framework

· New money from government will make a real difference

· £20k offer of support from Hampshire MENCAP

· Data and information - Improving information sharing:

· Combining `yellow cards' with Joint Information Link to get a rough estimate of need and identify high risk children

· Development of Strategic transition group to look at how transition can be managed

· Other factors:

· There is time to reflect and develop services equitably across the county and agree a long-term strategy for the future to make a real sustainable difference.

Threats:

· Financial:

· Hampshire's proportion of funding is insufficient

· Sustainability of funding after 3 years

· PCT funding not being ringfenced - potential losses for short breaks

· Funding being swallowed up in administration costs

· Resources - use of existing resources:

· How to decide whether to increase the number of people receiving services or provide additional services for the existing client base

· Emerging risks of existing resources being duplicated through creation of Children's Centres

· Partnership working:

· Boundaries of local authorities and Primary Care Trusts, and between other services, do not converge

· Changing roles within organisations

· Conflict in Health of Adult and Child agendas

· Other issues:

· Participation and user-led services may be difficult to achieve

· Too many mapping exercises are raising expectations without any signs of delivery

· A risk that the disability agenda may overtake the needs of children with life-threatening conditions.

· Transport:

· Transport logistics are not currently thought through - particularly for rural areas

2. Feedback on key questions

2.2 The Children and Young People Select Committee was particularly interested to gather stakeholders' views in response to five key questions. The feedback provided by working groups is summarised in the table below.

    6. Is the key worker/lead professional system in place? Is it working with regard to coordination across different agencies?

· The key worker/lead professional system is not in place and is not helping to coordinate across different agencies at present. However, as this role develops, the following key points need to be addressed:

    o The role of the key worker/lead professional should be to coordinate services around a child, dependent on one form of assessment.

    o It will be time-consuming to do the job well and it is a complex skilled role. It would be difficult for a professional to undertake the role in addition to the `day job'.

    o The individual undertaking the key worker/lead professional role would need to know the extent of services available and this requires an extensive knowledge base.

    o Agencies/various professionals don't/can't always attend meetings - this may prove to be problematic for the lead professional when coordinating agencies.

    o Education and care do not usually pick up the lead professional role due to fear of increased workload.

    o There is a need for common, consistent processes for the lead professional to use. Currently 3 approaches are used and this will prove to be a challenge (Care pathway, Social Care Plan, Education Needs assessment)

    o The voluntary sector has the capability to fulfil the role of lead professional, but may not have the capacity to undertake it.

· Other issues arising:

    o Having services constrained within Hampshire budget silos is a barrier to effective coordination across agencies.

    o £28,000 funding is being used to develop 2 pilots to introduce the lead professional role: 1) For young children, Extended School Partnership is used as lead professional, passing cases on to schools; 2) For 14-19 year olds, Connexions PAs to be lead professional. There are grave reservations about this approach as when schools are closed in August there will be no lead professional to coordinate care around a child. Schools are already supporting children during term time and in extended schools and cannot be stretched further.

    7. How is need assessed across the County and how can this be improved?

· Need is currently assessed through the following channels:

    o Paediatricians

    o Special care/continuing care

    o Community Children's Nurses

    o Reception and assessment/disabled children's team

    o Hampshire respite panel statistics can help to define a picture of need

    o JENI funding applications

    o ICES - the community equipment service (county-wide database)

· However improvements in identifying need could be made in the following areas:

    o The creation of a clear framework of performance management information including, for example, data showing referrals to different services.

    o Commissioning heads need a clear coherent picture of need from the ground up.

· Need is also assessed using eligibility criteria for children with disabilities, but:

    o Different agencies have different criteria

    o Parents and professionals don't understand the criteria

    o Criteria are variable and can be subjective i.e. can suit `those who shout loudest'

    o Services are often provided on the basis of their availability, rather than responding to actual needs.

· Ongoing work in making improvements in assessing need should take account of:

    o A current lack of joining up with unitary authorities and the acute sector

    o Common Assessment Framework - this should assist with identifying need and collecting information to support this

    o Demographics/Joint Information Link

    o Focus on pockets of social deprivation

    o Early identification through school

    o Statementing

    o Improved work on mapping to match resources with need

    o Consultation with parents to better understand needs

    o Improved community teams - dedicated resource

    o Greater linking up of strategic plans and tools for analysing need across agencies

    o Improved use of voluntary organisations and the information they hold

3) Are services easy to access for children and their families? How can this be improved?

· There is a need for a clear continuum of services to respond to all needs at all levels.

· Greater access to equipment and resources is needed.

· Transport is a key issue, from school-short break and short break-home

· There is a gap in provision for 0-3 year old children

· Thresholds for accessing services are too high and too variable

4) What early intervention approaches are being used currently? Are these reaching all groups in the community?

· There are different systems depending on the point of identification i.e. birth or later in life learning disability

· Child Disability Teams and Locality teams

· Universal services including GPs

· Targeted services such as Portage

· As yet it is uncertain as to whether these approaches reach all families as we do not have sufficient data/cannot rely on the quality of data available to establish this.

5) How are parents and children/young people being involved in planning, commissioning and providing services? Is this effective?

· Involvement through district nurses, health visitors, practice nurses

· More could be done to train and develop parents and carers, to invest in, and value, their role

· More could be done to get to know the parents/carers using services.

· Securing proper feedback from service users would be helpful.

· Good progress has been made in providing advocacy for young people.

· Parents and children would like to see less talking and more decisions/action being taken to improve services!