CONTENTS

  1.  Executive Summary

  2.  Introduction

  3.  Background

  4.  The Specialist Needs of People with Acquired Brain Injury

  5.  Resourcing Brain Injury Rehabilitation

  6.  Organisation of Brain Injury Rehabilitation

  Appendix I  Biography Jim Weir

  Appendix II  Funding comparisons between Birmingham and Manchester

  Appendix III  SSI report "A Hidden Disability"—July 1996*

  Appendix IV  Letter from SSI Chief Inspector—9th February 2001*

  Appendix V  Letter from Margaret Hodge—29th January 2001*

  Appendix VI  Reply to Margaret Hodge—19th February 2001*

*  Not Printed.

1.  EXECUTIVE SUMMARY

  Rehab Group have established a network of specialist brain injury rehabilitation services from Aberdeen to London. These services have been highly successful in placing over 50 per cent of clients into paid competitive employment, and a further 20-25 per cent into other positive community based outcomes.

  Despite the success of these initiatives, which have been developed in partnership with a range of agencies including Health Authorities, Social Services, Employment Services and the Insurance industry, funding variations and policy inconsistencies are placing some of the centres at risk of closure.

  In particular, the Greater Manchester Brain Injury Vocational Centre (GMBIVC) is in imminent danger of closure. The problems we have experienced in Greater Manchester illustrate gaps which exist in the organisation and resourcing of rehabilitation for head injured adults.

  Our evidence seeks to address some of the key problems in planning specialist services for those with acquired brain injury. In summary these are:

—  Lack of cohesive planning to include voluntary sector and incorporate existing provision.

—  Inability of neighbouring authorities to co-ordinate and agree strategic development of specialist provision.

—  Failure to recognise the specialist needs of people with acquired brain injury.

—  Attempts to make existing provision, such as Mental Health, Learning Disability or Pan Disability provision "fit" the needs of people with acquired brain injury.

—  Inability to assess the complex cognitive, social and rehabilitation needs of people with acquired brain injury.

—  Focus on higher acuity needs means that those with the most potential to progress from dependence on long term disability benefits into independence in work are considered to "high level" to qualify for support, but not sufficiently job ready for mainstream employment training provision.

ISSUES AND RECOMMENDATIONS

  Despite both the SSI report "A Hidden Disability" and the NHS Executive recognising the need to develop specialist services for brain injury rehabilitation, little has been done to facilitate this. There is a clear need for action following on from the SSI report to fully recognise the specialist needs of those with acquired brain injury.

—  The number of agencies involved and funding sources required to give an individual the most appropriate service provision, make the provision of services both complicated and time consuming to provide.

—  Regional variations in the way in which needs are assessed means that, funding for individuals with similar injuries varies across the country.

—  The New Deal for the Disabled should be made accessible to those with acquired brain injury and it is an anomaly that it is not.

—  Voluntary sector organisations need to be fully involved in the planning for specialist services to ensure a seamless care.

—  Our experiences in Greater Manchester outlines the numerous problems that are faced by voluntary sector organisations in trying to work with the statutory sector, particularly in establishing new services.

—  The mismatch between who pays for and where the cost benefit goes of providing successful brain injury rehabilitation services means that both individuals and the Exchequer are losing out. We firmly believe that there is a clear argument for funding direct from Central Government Sources for the provision of specialist services for Brain Injury Rehabilitation.

—  Clearly the success of organising and co-ordinating the provision of brain injury rehabilitation services combined with appropriate resourcing will impact on the availability of services.

—  In Greater Manchester Rehab UK feels badly let down by the funding agencies, but what really matters is that individuals living within the area will be deprived of an essential service, which is successful, cost effective and in the medium to long term is a net contributor to the Exchequer.

2.  INTRODUCTION AND BACKGROUND

  This submission is made on behalf of Rehab UK which is part of Rehab Group. Rehab UK is a registered charity that was established in the UK in December 1994 as the England and Wales division of the Rehab Group. The Rehab Group, which celebrated its 50th anniversary last year, provides a range of rehabilitation, training and employment opportunities for disabled people in Ireland and Scotland.

  Rehab UK provided services to nearly 500 people last year, and offered advice and guidance to double that number. It operates Brain Injury Vocational, Case Management, Community Integration and Adolescent Services based in centres in Manchester, Newcastle, Birmingham and London.

  These services have been developed with the support and encouragement of a number of other organisations, particularly the local health and social services authorities and Employment Service. We continue to build upon the excellent relationships we have with local employers who support us by offering placements and job opportunities.

  Rehab Scotland operates similar services in Glasgow, Fife and Aberdeen. Each centre offers programmes of vocational rehabilitation to assist people with traumatic brain injuries to re-enter the labour market. The goal is to place at least 50 per cent of clients into jobs or further education, and this target has been exceeded in every centre each year.

  We receive three referrals for every one place we are able to offer on the programmes, and for those we are unable to take on, we offer advice and guidance about alternative sources of help.

  Prior to 1970, it was very unusual to survive a severe traumatic brain injury. Since then, improved trauma services and neuro/surgical techniques have meant that many badly injured people do survive and need rehabilitation services and support.

  Brain injury is acquired following severe trauma to the head. An estimated 58 per cent of injuries are the result of road accidents. Typically those with brain injury are predominantly young people under the age of thirty. Their life expectancy remains much the same as the general population and therefore the numbers affected will continue to grow.

3.  SPECIALIST NEEDS OF PEOPLE WITH ACQUIRED BRAIN INJURY

  It is increasingly recognised that the growing numbers of brain injured adults require specialist rehabilitation services in order to gain, regain and sustain employment. This is because the problems following a brain injury are often subtle but highly disabling and, without intervention, frequently lead to job loss and long term unemployment. For example, impulsive and sometimes anti-social behaviour, concentration and memory problems, poor judgement and fatigue are common following a head injury, but these problems may not become apparent until the client has attempted to return to work and failed.

  Current programmes aimed at serving people with mental health and learning disabilities are unable to meet the special needs presented by this group, and consequently many clients are left with little or no support in their attempts to re-enter employment.

  Because the number of survivors has grown dramatically in only the last 20 years, the needs of this group have not, to date, been fully recognised by Government and local agencies. At present any proposed services tend to be low volume, high cost programmes, which, in times of budgetary constraint, few health and social service authorities have been able to fund.

  The Social Services Inspectorate Report "A Hidden Disability" published in July 1996, stated that "Because this is a new client group with no historical claim on resources, current models of service provision are often not appropriate for head injured people"... "Attempts to simply map their needs onto those of existing client groups may result in inappropriate services being offered, or in individuals finding that they do not fit the eligibility criteria of existing groups". (See attached Social Services Inspection Report, page 2, last three paras, published July 1996).

  The NHS Executive has also recognised the need for these services to be jointly planned and funded through the Community Care Plan. They have indicated that it is essential that rehabilitation services be developed in partnership with the voluntary sector. To have long term viability however, the programme has to form partnerships with statutory and voluntary agencies to provide a cohesive, innovative service.

  The SSI report whilst acknowledging the distinct needs of those who suffer acquired brain injury and the need to work in partnership with local agencies, has not been progressed or implemented by Government.

3.  RESOURCING BRAIN INJURY REHABILITATION

Costs

  The average overall cost of our programme, per beneficiary of rehabilitation and training services is just £8,500.

  Over 90 per cent of the target beneficiaries are in receipt of long term disability benefits. Brain injury disproportionately affects young people and the number of survivors is increasing. Therefore the potential cost to the Exchequer of providing lifelong benefits for those who suffer acquired brain injury, is enormous.

  We estimate that completion of our specialist programme will generate a saving to the Exchequer in less than a year after a client has finished the programme. In addition, graduates of the programme, far from being a cost to the exchequer become contributors, both in productivity and in payment of taxes.

  Setting aside the obvious financial merits of this programme, the social benefits of facilitating young people, many with a significant contribution to make to society, from social exclusion to social inclusion and economic independence are great.

  However, whilst the net benefit gain goes to the Exchequer, the burden of funding rehabilitation services are placed on the over-stretched local budgets of local social services and health authorities.

Funding Sources

  Consequently, there is no incentive for these local agencies to secure the rehabilitation provision that has the best chance of delivering a successful outcome for an individual. This response from an authority in Greater Manchester illustrates this problem:

"It is with regret that I must inform you that Bolton Metro are unable to make a contribution to xxx's placement with you, our assessment has been undertaken, and although it is felt that xxx would benefit from your programme, the funding is unavailable." (Bolton Metro 23 August 2000)

  The aim of the four brain injury centres, run by Rehab UK, is to assist clients to achieve independence through work, by bringing together funding streams that provide the appropriate service provision for each individual.

  In order to secure funding for its activities, Rehab UK is required to negotiate contracts with a multitude of different agencies. Typically, each centre will have to approach up to 10 different Health Authorities, 10 different Social Services Authorities, one Regional Employment Services agency (this will increase following the New Deal for the Disabled initiatives) and one Regional ESF agency. In addition to these the centre will try to secure extra income from TECs and FEFCs (soon to change to LSCs) and must also try to develop links with local solicitors in an attempt to secure private fee paying clients. All of this places an enormous burden on the organisation and its staff.

  A comparison between the funding streams in Birmingham and Greater Manchester demonstrates the different funding sources and impact that different regional funding assessment and mechanisms can have:

	Birmingham £	Manchester £
Core funding	140,500	56,688
ESF	70,000	60,000
Employment Service	133,884	25,600
FEFC	19,475	18,166
TECs	8,000	0
Legal and Insurance Fees	155,999	50,580
TOTALS	527,935	211,034

  Many clients need early intervention work, after hospital discharge, which cannot be undertaken in mainstream programmes, and which cannot be achieved in the short timeframes allowed by these programmes.

  The average income per client in Birmingham under the Work Preparation contract was £3,005.37 compared to £1,784.27 in Manchester. The most significant difference however between the contracts are that, in Birmingham, we have been able to secure funding for 67 per cent of all clients on the programme in 2000. In Manchester, we have only been able to secure funding for 16 per cent.

  Because there is little understanding of the needs and requirements of those with acquired brain injury both locally and centrally, they do not always fit the requirement for funding sources that we believe they should be able to access. For example both Margaret Hodge and Baroness Blackstone have suggested the New Deal for the Disabled (NDDP) as a potential solution to the GM BIVC funding problems. However, it is important to point out that for vocational programmes such as those run by Rehab UK, the bidding criteria is restricted.

  It is true that Rehab UK could bid for funds under the proposed NDDP, job-brokering scheme, but the way in which the funding is structured, makes it financially difficult. For example 30 successful outcomes per annum would provide a total of £39,000, but this is not payable until the end of the course and/or when employment was secured. This gives us significant cash flow difficulties and in the case of the GMBIVC will not save the centre from closure.

  Furthermore, the proposal that 20 per cent of clients would need to be randomly deferred for 12 to 18 months—in order to measure progress against those clients who do receive assistance—is unacceptable to Rehab UK and unworkable for those who suffer an acquired brain injury.

  In response to requests for funding, some local authorities particularly in Greater Manchester have argued that they wish to develop local services for their clients rather than services based at large, centralised centres. This is an approach we would support, but would stress that as with all specialist provision the ability to establish effective, specialist teams requires some centralisation in order to build up the expertise and volume required.

  Ironically, in Manchester the need for these community based services are written into the Neurosciences Plan, but this has not been fully implemented despite the fact that it is due to take effect in May 2001. Rehab UK has secured up to two thirds of the costs of their services from other sources. The threat is that a specialised and highly trained team will be dismantled, only to find that in two years time when the restructuring of the Neurosciences Initiative is complete, the need for the services will be even more apparent.

4.  ORGANISATION OF BRAIN INJURY REHABILITATION

  Clearly the non statutory sector have an important role to play in providing brain injury rehabilitation services and particularly in bridging the gaps that exist between the statutory agencies.

  However our experience has shown that levels of successful collaboration between non-statutory and statutory bodies for the delivery of brain rehabilitation services can vary widely depending on:

—  regional politics, priorities and structures;

—  levels of commitment and understanding of the services required;

—  perceptions about who has the responsibility for service provision;

—  personal relationships between individuals.

  In addition we have found that local agencies are reluctant to commit long term funding to new initiatives, arguing that funding will be based on the effectiveness and outcomes achieved. Establishing new services therefore often depends on risk, based on assurances provided which are often not then honoured.

  We have also found that there is poor co-ordination and planning of local provision, particularly within the Health and Social Services departments. In addition, it is frequently the case that the criteria established under the Community Care Plan exclude people with acquired brain injury because the assessment instruments used are biased towards those with physical impairments or mental health problems, and unable to assess the impact of more complex cognitive problems such as lack of initiative, process problems or complex memory impairments.

  Although we are hopeful that the Welfare to Work Joint Investment Plan will be successful in providing "joined-up" services for people who want to work, stay in work, or to move closer to their place of work, we are concerned that the lack of understanding about brain injury rehabilitation and difficulties we have in terms of involvement and co-ordination with local agencies, will mean a continuation of the difficulties we face.

  Again, our experience in Manchester illustrates the problems faced by the voluntary sector in collaborating with the statutory sector:

  The services of Rehab UK and indeed other voluntary sector organisations (such as the Brain and Spinal Injury Charity — BASIC) and Leonard Cheshire have not been included in the North West Regional Neurological Rehabilitation Plan, despite assurances initially from the project leaders that we would be included. Consequently, all of these services are now facing significant challenges in surviving the restructuring of the services, notwithstanding their success.

  Our funding model has been to secure one third of our funding from the Health and Social Services, one third from the Employment Service and we will secure one third from fund raising, and fee for service arrangements with the legal and insurance industry: and whilst we have secured contracts with the Employment Service in all our Centres, the differences in the rules in the North West make people with acquired brain injury ineligible. This is because in the North West region, as part of the market testing initiative, a very rigorous "work readiness" standard is applied which excludes almost all people with acquired brain injury despite their potential. Consequently our income from the Employment Service is less than 25 per cent of that generated in Birmingham for example. Similarly, our income from Health and Social Services has not met our expectations and this has placed at risk the future viability of the Centre.

  In Greater Manchester, Rehab UK consulted with Glynnis Marriott (Neurosciences Project Leader) and Hope Hospital extensively prior to opening the GMBIVC. In addition, every Director of Social Services was visited by the Director of Development to discuss services. Some authorities made commitments in writing (Manchester, Oldham, Salford and Wigan). Salford paid for the first two years, but have subsequently withdrawn funding, Wigan withdrew their agreement and Manchester and Oldham paid. Stockport never committed. The others expressed their intention either to purchase on a spot purchase basis or general support but did not contractually commit. However, Rehab UK were offered the opportunity for Manchester Social Services to act as the lead authority, in which we would be paid the core funding in full by Manchester on behalf of the region. As a result we stopped pursuing the Social Services Departments, expecting our payment to be from one source. Manchester withdrew their offer to do this only after the Centre was open.

  We have been in touch with the group preparing the Welfare to Work Joint Investment Plan, as well as all the other local agencies in Greater Manchester involved in preparing the Joint Investment Plan, and to date no satisfactory response has been given to the central issue of core funding for the GMBIVC from Bolton, Bury, Rochdale, Salford, Stockport, Tameside, Trafford or Wigan. It is unfortunate, to say the least, that one of the most successful examples of welfare to work and rehabilitation services in the North West will close on the same day the Welfare to Work Joint Investment Plan is presented.

February 2001

  Mr Weir qualified as a social worker in England 1985. He moved to the USA in 1986 where he obtained an honours degree in Psychology from the University of North Carolina. He subsequently established a private Case Management practice specialising in working with Trauma and Brain Injury patients. He is a certified Case Manager in the USA and in 1992 was appointed to the national certification and standards panel of the Case Management Society of America.

  In 1991 he was appointed Program Director of the Medical Rehabilitation Program and later became General Manager at the Healthsouth Rehabilitation Hospital in Lancaster, South Carolina, specialising in neurological rehabilitation providing Coma Management, Acute, Post Acute and Community Re-entry Services.

  In 1995 Mr Weir returned to the UK and joined Rehab UK. Since then he has been responsible for the development of Brain Injury Rehabilitation Services in London, Birmingham, Manchester and Newcastle in partnership with Health Authorities, Social Services and the Employment Service. Mr Weir is the Chairman of the European Platform Brain Injury Working Party which is working to develop European standards of community and vocational rehabilitation and is also working on joint training and qualifications for people working in the field of rehabilitation and acquired brain injury.