Authors: Simon Duffy and Pippa Murray
The Personalised Pathway was developed as a whole system reform for services to disabled children and their families. The Personalised Pathway ends the confused departmentalization of need and promotes personalisation from birth.
The inability of current services – health, education and support - to make a sustained difference to the lives of disabled children and their families results in distress and inequality. Parents are looking for straightforward solutions to the difficulties and pressures they face: an extra pair of hands, a night’s sleep, and flexibility to use support when they need it most. Disabled children want opportunities for friendship and fun; their brothers and sisters want to hang out with their friends and have quality family time.
The Personalised Pathway was developed by Pippa Murray and Simon Duffy and builds upon their earlier model of Personalised Transition. It takes the central principles right back to birth in order to increase family control, improve support, strengthen capacities and increase accountability.The Personalised Pathway outlined in this paper provides the opportunity for all these things to happen in a simple, straightforward way that has the scope to transform family life, provide greater equity, and allow scarce resources go further.
The Personalised Pathway is an integrated model of support for disabled children and their families, from birth into adulthood.
It has 4 key elements:
- Family leadership - systems need to respect and support the leadership of families at every stage.
- Curriculum for citizenship - children and families do need support and additional expertise, but this support should be focused on helping the young person achieve active citizenship.
- Co-ordinated expert support - families need a partnership with the state and this is usually best managed through one clearly identified individual working within an appropriate organisation.
- Integrated individual budgets - most additional support and funding could be integrated in one individual budget that can be managed by the family or a trusted professional or representative.
These elements are described in more detail below.
1. Family leadership
All families should have the authority to plan and lead their own support and shape the way things work locally. This capacity should be assumed and supported. At the initial point of contact parents will be:
- Put in touch with other families – all parents bringing their child to the Development Centre will have opportunities to meet other parents prior to their initial appointment.
- Given information about systems and the range of available support and services. Once parents have enough information to understand the world they are entering into they can influence, demand and offer constructive criticism with confidence.
- They will be empowered to put their own views forward, regardless of the availability of activities, support or services. Those views will be taken into account as plans are made for their child.
2. Curriculum for citizenship
When children reach school age the school should become the natural hub for providing support and education to the child and their family. The school will takeover from the Development Centre the role of co-ordinating any additional external expertise. Developing a curriculum for citizenship helps schools realize their role as a valuable resource to support the student’s preparation for life as a citizen.
In addition, personalised learning programmes in schools should:
- Enable all children and young people to communicate what is important to them. This fulfils the fundamental human right of having a voice, and allows staff to focus on the voice of each student, whatever their means of communication. This careful listening provides the starting point for developing a wide, creative curriculum with a focus on communication and skills.
- Develop person centred approaches throughout the school and this will include person centred reviews for all students (ensuring health issues are included), home school agreements, communication charts.
- Provide a skills based curriculum giving students opportunities to make choices and (where appropriate) decisions.
All students with a Statement of Educational Need should have an identified budget with which to buy the education and resources that best suits their needs.
3. Co-ordinated expert support
Families should get the right support, at the right time, with professional leadership and co-ordination provided by one lead agency at any time - Children’s Development Centres and Schools will become vital points of focus for professional support. The initial multi-agency assessment will act as a critical point for:
- Informing parents about their entitlements - working out any individual budget through health; and preparing the way for an individual budget connected to the child’s eventual Statement of Educational Needs.
- Completing the Common Assessment Framework – this will be linked to a modest budget held by community lead professionals or key workers.
- Families will be signposted, as appropriate, to specialist services and resources in their local communities.
- Giving parents information about community resources and relevant voluntary agencies.
4. Integrated individual budgets
All families should have a clear entitlement to an individual budget which combines funding for support, education and the management of long-term health conditions. The Pathway should ensure that:
- Entitlements are transparent with clear eligibility and resource allocation systems for the different funding streams (eventually these systems will marry, with families having one assessment form that covers health, education and support).
- Families are informed of their budget at an early stage in the process so that they can take time and care with planning.
- Professionals supporting individual families will take the lead on streamlining particular areas of support needed from other agencies – e.g. housing, transport.
The Personalised Pathway would mean:
- Improved outcomes for children and families – Families will be able to shape the particular help they need to give their child the care and support most appropriate to their individual needs and their family life. Personalised education, assisted by a Portable Education Budget, will equip children for effective citizenship in adult life.
- A stronger voice for parents – Families will be enabled to organize the additional support they need to help their family flourish. Children and families will be at the heart of planning for their support and developing the Pathway in their local area.
- A greater focus on children’s needs – Timely, accurate, positive assessments and regular reviews linked to personal budgets will lead directly to desired outcomes.
- Systems will become simpler, more efficient and more accountable – Entitlements and administrative systems can be streamlined and simplified, and professional expertise better focused. Entitlements, expressed as individual budgets in health, education and support, will be transparent.
- The development of a more strategic local approach – Health, education and social care agencies will work closely together taking account of each other’s role and responsibilities in the light of the entitlements, needs and requirements of children and families, and in the context of plans for all children and families.
Moreover this policy can be put into practice now, because it is:
- Effective - increased personalisation of education, support and health care will drive up standards and better enable families to get the right support for their disabled child. Children and families will be able to get the support they need, at the time they need it.
- Feasible - education, health and social care are already funded in ways which allow for individual funding and portability and only minor technical changes in local policy are required to operationalise this system and much of the necessary changes have already been piloted.
- Attractive - local agencies, such as Children’s Development Centres, Children’s Centres and schools might realize their roles as valuable resources to support all aspects of family life.
- Affordable - it will cost the system no more, it will make better use of existing resources and it may even reduce some costs (particularly the demand for expensive residential schools).
However to drive this policy forward we will need to see local and national leaders move on from narrow, departmental perspecitives. We will need to see leaders emerge who are willing to champion the family and the young person and understand that the needs of the family come before the needs of the system.
The publisher is the Centre for Welfare Reform.
Personalised Pathway © Simon Duffy and Pippa Murray 2010.
All Rights Reserved. No part of this paper may be reproduced in any form without permission from the publisher except for the quotation of brief passages in reviews.