Progress Report

Below is the latest progress report on the Pathfinder Project 'Services to Disabled Children and their Families'.

Project Purpose

To work together to develop, agree and implement a strategy to deliver an integrated approach to service provision for disabled children and their families.

Vision

In order to realise our vision for children with disabilities and their families we believe that:

Disability is a social construction and inclusion is, therefore, about removing barriers.
Every disabled child has the right to reach their fullest potential in life.
Provision of services should meet all statutory duties.
Children with disabilities are entitled to have a voice in any decision being made about their lives and service provision.
Carers of children with disabilities are entitled to have a voice in any decision being made about service provision.
Schools, professionals and voluntary agencies should work together in partnership to provide services.

Background – Key Services of the Project

At present many different agencies across Health, Social Care and Health and Education within the statutory sector, and independent, voluntary sector provide services for disabled children and their families. This situation is very confusing for users and carers and results in considerable duplication of effort and service hours.

Nationally, guidance is towards better co-ordinated inter-agency services (see HSC 2000/0/6: LAC (2001) 23 S21, 22, 34, Co-ordinated Service Planning for Vulnerable Children and Young People England and 'Valuing People' Ch 3) following the identification of poor co-ordination of services for disabled children, especially those who are severely disabled and their families. 'Together from the Start' Department for Education & Skills (DfES) / Department of Health (DoH), 2002, highlights partnership amongst central agencies as key to service delivery. The children's National Service Framework (NSF) also indicates the need for integrated services, partnership working with children and families as well as highlighting the existing fragmentation.

Locally, a seminar “Working Together” was held on 30 January 2002 and was attended by a wide range of stakeholders. The need to co-ordinate and integrate services was identified and it was suggested that this should include integrated assessment and integrated service provision. This was followed by a major local conference with input from Francine Bates, CEO of ‘Contact-a-Family’ and Chair of the NSF working party in June 2003 which raised awareness and expectation of change.

The Serious Case review of the death of Mark Owen Young and his mother was published in September 2002. Whilst no issue or failures within the Child Protection system are identified, it was critical of the poorly co-ordinated services for disabled children and their families and the action plan recommended that work should be undertaken to integrate and develop these services. The Action Plan was adopted by CEO at JEG in August 2002 and reaffirmed in July 2004. Durham Social Care and Health has adopted a position whereby the move towards integrated services for disabled children and their families is a primary strategic objective.

Durham County Council Social Care and Health and Education, with the involvement of the Health Authority, have completed a Best Value Review of Assessment and Planning for young people. This reported to Cabinet on 23 May 2002 and recommended the development of an integrated assessment process for all Children in Need including those who are disabled. This will be of particular relevance to PCTs.

'All Together Better', Durham LEA’s SEN Strategic Development Plan 2002 – 2007 presented a vision for future development to promote greater inclusion for children and young people with special education needs. “Removing Barriers to Achievement, the Government’s Strategy for SEN” (DfES 2004) set a new agenda for action at local and national level which fully endorses the inclusive approach of the LEA, particularly in relation to the development of 'Communities of Learning' and the role of the special school. This inclusive approach will require a joint commitment to interagency cooperation and planning.

The 'Every Child Matters' agenda is being driven forward locally by an Implementation Team with the remit to formulate proposals which will ensure the coordination of children and family service across the County Council. This group will also be taking forward the outcomes of the Best Value Review of Services to Support and Protect Vulnerable Children and Young People.

On 15 September 2004 the government published the National Service Framework (NSF) for Children, Young People and Maternity Services. The NSF aims to ensure fair, high quality and integrated health and social care from pregnancy, right through to adulthood. The Disabled Children’s Standard of NSF 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'.

In conclusion, considerable interagency work has already occurred and all agencies are committed to planning more closely. At this point there is no agreed coordination or interagency strategic direction. The decision to select Services for Disabled Children as a pathfinder for “Every Child Matters in County Durham” is intended to ensure the required interagency coordination and strategic direction is put in place across the county.

Project Aim and Objectives

To improve the quality of services for disabled children, young people and their families in order to promote inclusion and improve outcomes by developing and implementing an interagency strategy.

This strategy will require:

Undertaking a mapping of need and services.
Building upon the success of the Children’s Network, other agency databases, and predictive information to develop an effective multi-agency planning tool.
Developing an interagency process for commissioning services for disabled children and their families.
Developing clear eligibility criteria and pathways to services.
Building services around Children’s Centres, special schools and extended schools within the structures of Communities of Learning, where this is appropriate.
Developing a Key Worker System, which is shared and understood by all agencies.
Developing and implementing a multi-agency assessment and care planning/pathway planning process linked to ICS and the Common Assessment Framework (CAF).
Developing robust mechanisms to enter into, and maintain, dialogue with users, families and parent carers.
Coordinating a multi-agency training skills analysis and professional development in relation to disability.
Providing clear information about services.
Continuing the development and implementation of parent-held files.
Developing multi-agency in-county services for children and young people with very complex needs, including ASD, reducing the need for out of county placements.
Developing multi-agency involvement where services are being placed for tender.
Determining how services can be delivered in a cost effective way, reflecting Best Value, identifying where developments can be made within current resources and determining where further investment is required.

A number of these developments will take a significant time to shape and implement, while others will be ‘quick wins’, given the considerable commitment in the field to interagency working. Within the pathfinder project a plan for early developments will be produced. These will reflect the National Service Framework (NSF) standards.

Project Scope

The project will be a pathfinder for “Every Child Matters in County Durham” and will be led by the Pathfinder Project Management Group which reports to the Every Child Matters Implementation Team and the Children and Young People’s Strategic Partnership.

All statutory agencies will support the project and actively engage in its processes i.e. Education, Social Care and Health, the Primary Care Trusts and Providers Health Trusts. Each stakeholder organisation will ensure that they are regularly represented by a named lead(s), of sufficient knowledge, experience and seniority, with authority to contribute effectively to developments.

The active involvement of representatives of parent/carers, voluntary and independent organisations will be facilitated.

Consideration will be given to the range of ways in which service integration can be achieved but the early focus will be on actions which improve outcomes for service users and their families. Use of Health Act flexibilities will be considered.

Financial and staff resources will be identified within agencies which are sufficient to enable the work of the project.

The project will ensure that developments are congruent with the National Service Framework (NSF) (DoH/ DfES Sept 2004) and “Removing Barriers to Achievement – the Government’s SEN Strategy” (DfES January 2004).

Outcomes

Improved areas of service delivery.
Reduced duplication of service.
Effective and efficient services that are quality assured.
Services are cost effective and follow the principles of Best Value.
Increased the volume of compliments and reduced level of complaints about services.
Specific agency targets in this area are met.
Lessons from the process are drawn to inform the wider agenda for Children’s Services.

Risks

Poor representation of key stakeholder agencies – no named representations, poor/ intermittent attendance, insufficient severity, insufficient empowering to contribute to developments.
Just about everyone agrees that integration for services to disabled children is 'a good thing' – however, a consensus on the best journey cannot be assumed. Entrenched views regarding service provision do exist and can be firmly and passionately held.
The project may not be sufficiently resourced to achieve its purpose.
Insufficient service/agency accountability with services 'dumping' problems on others.
The difficulty of moving at the right pace – not too slow as to stall, not so fast that people are left behind.
Not making a perceived difference in outcomes for children and families.
The danger of re-inventing wheels and creating new silos.

Resources and Support Mechanisms

Agreement at the highest possible level is essential to re-affirm the intention to develop inter-agency working.
A clear commission for the inter-agency strategy, within an explicit planning framework, is needed from Chief Officers.
Arrangements for delegation of responsibilities, reporting and accountability should be set out by Chief Officers.
Resources to enable the development of the strategy should be identified and made available.
Full engagement from all agencies involved with named representatives, of sufficient seniority, and authority to contribute effectively to developments.

Stakeholders

Project Sponsor: Every Child Matters Implementation Team.

Project Co-ordinator: Gail Hopper, Head of Children’s Services, Social Care and Health.

Pathfinder Project Engine Group

Primary Care Trusts – Trisha Cresswell Director of Public Health Durham and Chester le Street PCT
Social Care and Health – Frank Whitelock Strategic Manager Specialist Services Glynis Barron Service Manager Disabled Children
Education Department – Lynne Gregory Head of SEN Lindsay Smith Principal Educational Psychologist
Parent/Carer representation – Helen Geldard
Voluntary Organisation – Kath Rist Contact a Family
Provider Trusts – County Durham & Darlington Priority Services NHS Trust – Lesley Crawford Director Learning Disability, Acute Trusts – Catherine Hodgekiss
Special Schools Heads – Fiona Wood Villa Real School
Connexions – Alan Hazlet

Reference Group(s)

To be agreed.

Work/Task Groups