Authors: Frances Brown and Simon Duffy
The Smith family used to live in a very difficult situation. Two of their sons, Robert and William had very significant learning difficulties and the same degenerative disease. They lived together, as a family of five, in a two bedroom house with only the most minimal support. Eventually, when the family reached breaking point, they put both boys in a hospital unit and refused to take them home.
The NHS and Social Services accepted that they had an obligation to provide a jointly funded service to the two boys and so began by asking an independent organisation, Inclusion Glasgow, to develop two single residential services for the boys (which were each expected to cost £90,000 per year). Their assumption was that the family could not support their two boys and that the ‘challenging behaviour’ that the boys displayed could only be managed in an expensive residential support service.
The first thing that Inclusion Glasgow did was to gather more information about the boys and their family, using a process called Essential Lifestyle Planning and also to get the family to tell their own story in their own words.
The second thing Inclusion Glasgow did was to write a service proposal that set out the assumptions upon which a new service should be designed for the Smith family. Three of the most important of those assumptions were that the family needed:
This service proposal was agreed in principle and Social Work and the NHS agreed to jointly fund the new service, at a cost of £30,000 per year for each boy. Inclusion Glasgow organised all of the money which it received to provide support as an Individual Service Fund an identified fund of money ring-fenced and managed solely for the use of the boys to receive the support that they needed and other things that would help them get a good life.
Finding the family appropriate support became the first problem that needed a practical solution.
Inclusion Glasgow suggested that the family think about people they knew who might be able to help them. The family were reluctant to have strangers involved as they would need to spend a great deal of time in the family home and because of this they chose to employ a close family member to give them the support they needed and they are able to control this support on a day to day basis.
The second problem was resolved by agreeing a different payment schedule with the NHS and then by transforming some of the revenue funding into a capital grant that could be given to the family. Legal agreements were also made between Inclusion Glasgow, the family and the NHS to ensure that there was enough security for each party. The family worked effectively and quickly to find a new house which suited the needs of their boys and they located the right house which they have now lived in for 14 years.
The last major part of the service that needed to change was the respite service. The existing residential respite service cost £1,000 per week, per boy, and it refused to take both boys at the same time (‘they were too challenging!’). Inclusion Glasgow asked the family to think about the kind of breaks and holidays they really valued. When they realised how expensive the respite service was they replaced it by hire-purchasing a mobile home by the sea; this home gave the family much more flexibility. Sometimes the boys stayed at home while the parents had a break away; sometimes the boys went to the mobile home for a break by the sea. The family were able to enjoy life together much more effectively when they were able to live in a house that met all of their needs and were able to use their funding available to them to control the supports that they needed. The family became stronger and no longer merely dependent on others.
Over the last 14 years Inclusion Glasgow has continued to hold an Individual Service Fund (ISF) on the family’s behalf. Inclusion Glasgow manages the money and takes responsibility for employing Judy who is the boys' Aunty; offering her training and support. One of the boys sadly died some years ago and the individual budget was adjusted to address the needs of Robert who continues to get the support he needs. The Individual Service Fund (ISF) allows the family to determine when they get support how much support they get and they manage all of this on a day to day basis. They have continued to plan around Roberts needs sharing dreams and hopes for the future and using the ISF creatively to achieve these.
Inclusion Glasgow takes responsibility for accounting for the money and gives the family regular information on what is being used and discusses with them how they want to continue to use the money they have available. The caravan has long since gone but the family are now needing to extend Robert's room due to his changing needs and some of the ISF money has been spent on building a small summer room extension to his bedroom which Robert loves spending time in.
This very individual arrangement gives the family the control they need and want over who supports their son, how they spend the budget and allows them to balance their son’s needs with their own needs. They have all the control, flexibility and choice they want without some of the anxieties and stresses of managing the money directly and being an employer. Robert has thrived and continues to live a full life at the centre of his loving family.
The publisher is The Centre for Welfare Reform.
Using an Individual Service Fund (ISF) © Frances Brown and Simon Duffy 2011.
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.