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“We were concerned to hear that the provision of equipment for sick children is beset by difficulties. We recommend suitable mechanisms to improve the overall management and coordination of the purchasing, utilisation, maintenance and evaluation of equipment by health, social and education services and the voluntary sector.”House of Commons Health Committee [edited]
Children with disabilities often need specialised equipment to enable them to make the most out of life. Despite its importance, provision of this equipment is often poorly coordinated with no consistency in what is provided nor how it is funded. In East Norfolk we have developed an interagency group to address this problem. It includes members from the three main agencies (health, social services, and education) encompassing a range of professional expertise in assessing children's equipment needs. It funds equipment that is not routinely provided by one or other of the statutory agencies, and is financed by equal recurring contributions from all three agencies. This article describes how we got there.
It was a public health exercise in that it is based on a health needs assessment, it covers an administratively and geographically defined population, it required multiagency collaboration, and is subject to ongoing monitoring and evaluation. It also depended on those other essential criteria for a successful public health initiative: luck, opportunism, and compromise.
In the past 10 years the complexity of equipment has increased dramatically, with advances in computer technology and in the application of ergonomic and orthotic principles. As a result, the potential benefits to children have increased, as have the costs. Parents have become more assertive, and organisations in the voluntary sector have become more effective in applying pressure on the statutory agencies. There has therefore been a rising demand on therapists, paediatricians, social workers, and educationalists to supply appropriate, high quality equipment for disabled children.
The response from the statutory agencies has been characterised by lack of agreement over common assessment procedures and ambiguous lines of responsibility for funding. Barriers to a coordinated response are:
the tight constraints on public sector budgets
the less than high priority that disabled children have among the agencies
the devolvement of budgets within all these agencies so that any collective action needs agreement across a large number of units
the fragmentation of care both between and within the different agencies
and the different cultures and professional backgrounds of workers at all levels within the three agencies.
In consequence individual professionals have had to use ingenuity and persistence in seeking funding. This includes having to solicit money from charities, and having to tailor assessments to what they know is likely to be available. Meanwhile, pieces of unused equipment are “lost” in school cupboards and stores because no-one knows who owns what or where it is located. Managers are uncertain about which agency is responsible for what type of equipment—for example, specialised seating could be seen as a health need, a social need, or as an educational need depending on the circumstances. Equipment is, in effect, rationed by procrastination. The whole process has been aptly, if cruelly, summed up by the expression “the tripartite bum” to describe the child at the centre.2
Until 1994 this was the situation in the area of Norfolk covered by the former East Norfolk Health Authority (some 80% of the county). Elsewhere in East Anglia there were examples of more successful interagency work. In neighbouring Suffolk a group of senior managers from the three agencies processed requests for equipment, and a communication aids assessment centre was being developed. In the west of Norfolk (a different health authority) a multiagency group of professionals administered an equipment fund and it was their work that acted as the prototype for east Norfolk.
Demography and administrative boundaries
A further barrier to local multiagency arrangements was the overlap of administrative boundaries. The local authority responsible for education and social services covers the whole county of Norfolk (population 775 000). There were two health authorities, one in the west also included part of neighbouring Cambridgeshire. The health authority in the east of Norfolk had a total population of 620 000 of which around 105 000 were aged 0–14 years, with 6600 births per year. This health authority was served by seven National Health Service (NHS) trusts (three acute, two community, one mental health, and one joint) of which four provided services to patients in other health authorities (and counties) as well. To add to the confusion, the boundaries and responsibilities of the health authorities and some of the trusts had changed just prior to this project and have subsequently changed on more than one occasion.
Setting up the fund
In 1994 a £10 000 bid to “joint finance” was made to set up an equipment fund. (Joint finance is a scheme administered by health authorities for pump priming multiagency developments.) The extent of unmet equipment needs were unknown and the first year was intended to allow preliminary development work. This included establishing criteria for which equipment would be eligible to be provided, the mechanism for processing applications, and the development of a bid for continued financing of the group.
The following year we made a further bid for three years' funding, again through the joint finance scheme. At this time NHS boundary changes had brought a neighbouring trust within the control of the health authority. After some negotiation between the trusts, the health authority, and the social services and education departments of the local authority, an annual grant of £21 500 was made to set up a scheme covering the whole health authority area.
Membership of the group administering this fund was designed to provide the widest representation with a minimum number. It includes speech therapists, occupational therapists, and physiotherapists, paediatricians, a social worker, and an educational psychologist who provide professional expertise and also represent their agencies. The health professionals have been chosen to include representatives of each of the NHS trusts. It is chaired by a senior social services manager who holds the budget.
The criteria for funding have been continually developed and those currently used are shown in table 1. The general principles are to fund equipment that meets needs in different settings, and which is not the clear responsibility of one of the statutory agencies. Requests for equipment require an assessment from two professionals, ideally from different agencies and one of whom is usually a therapist. The group contains sufficiently wide membership to be able critically to assess these requests. The final decisions have always been on the basis of a multiagency consensus.
The process of coming to this consensus has thrown up some interesting dilemmas. The scheme has not funded equipment such as lycra body suits, orthoses, keyboards for classroom work, or specialised toiletting facilities as these were felt to be the responsibility of single agencies. The group has also relied heavily on therapists' expertise and, where possible, on evidence of effectiveness. Hence, certain types of walking aids and communication aids have not been funded because they were felt to be either clinically inappropriate or ineffective. On the other hand, discussions between the group, parents and voluntary organisations have led to a protocol for the supply of buggies as part of a package for children, such as those with autism, whose behaviour results in severe mobility problems for them and their families.
Population needs assessment and evaluation of scheme
A textbook public health intervention is preceded by a population based needs assessment and followed by an evaluation. In this case, both were subsumed into one exercise. The initial £21 500 per year was based on little more than an educated guess of the funding requirements. Better evidence was required of the needs for equipment and the functioning of the scheme to justify recurring funding. Furthermore, much of the necessary information for a needs assessment became available as a result of the operation of the fund. We therefore set up a study to collect and analyse a range of quantitative and qualitative data.3
Selected findings from this study included the following.
Defining needs is a provisional and arbitrary exercise. From a professional and parental perspective there is always more or better equipment that might be helpful
Teasing out statutory responsibilities released a lot of worms from various cans! For example, the health authority believed trusts were responsible for providing standing frames yet none of the NHS trusts had a budget for these
Based on data from the OPCS (Office of Population Census and Surveys) disability surveys,4 5 information from therapists on equipment needs, and population estimates from the health authority patient register of 140 000 0–19 year olds (that is, 105 000 0–14 year olds), we estimated a total annual equipment budget of £157 000, of which £107 000 was for physical equipment and £50 000 was for communication equipment (1997 prices). This total includes equipment already supplied through the statutory agencies and so any extrapolation should take into account existing local funding arrangements.
Data from the five years of the fund's operation show how the money was spent (table 2). The two main items of expenditure have been on specialised seating and communication equipment. The cost of seating is increasing rapidly and commercial practices such as preventing adaptations for one type of seat being fitted to other manufacturer's seats are appearing. Communication aids fell into two main categories. A small number of sophisticated computer based aids were funded after careful assessment and evaluation. However, 80% of the items and 10% of the expenditure on communication equipment was on low cost aids and accessories. Other items included sleeping systems, standing frames, and even an electric toothbrush (for a child with a muscle disorder who could not brush her teeth independently).
Lessons learned from five years of running the scheme
The evaluation of the fund's work helped secure recurrent tripartite funding on the basis that the provision of equipment is now more equitable, flexible, and responsive to families and users. However, this was only achieved after delicate negotiations with each of the three agencies in which we had to demonstrate simultaneously the value of the scheme, the prudency of our management, and the opprobrium they would receive from the other two if they did not contribute to continued funding. The evaluation has also enabled us to secure a further £60 000 over two years exclusively for communication aids, although we will again have to make a case for this to be continued after the grant runs out.
There are still gaps in the provision of equipment for disabled children despite our scheme. Administration of the budget and the supply of equipment are increasingly complex. We are also aware that the continued functioning of the group depends on the commitment of the individual members, none of whom has this specified in their “job description”. However, benefits include being able to keep track of equipment and provide an efficient system for recycling unused equipment. We have begun to rationalise systems of maintenance and insurance of expensive equipment. We have also found that requests for equipment that are clearly the responsibility of a single agency can be redirected and processed more rapidly.
Implications and conclusions
Multiagency developments are difficult to implement, despite modest costs. Although money is used more efficiently and probably provides overall savings, the financing of such schemes remains vulnerable to restrictions in any of the participating agencies' budgets, and to other unconnected interagency squabbles over resources. The viability of our scheme has, at times, depended on opportunism and compromise, even though the funding agencies have generally been very supportive. Ultimately, what has persuaded us all of the importance of this scheme has been the responses of parents who have welcomed the removal of bureaucratic hurdles in obtaining equipment for their children.
This paper is based on work largely carried out by Kathy Parker and members of the East Norfolk Joint Equipment Group, funded by a grant from Norfolk Social Services department, to whom we are grateful.