Reports & Accounts > Trustee Report 310108

Trustees report for the year ended 31.01.08

OBJECTIVES AND ACTIVITIES

The Challenging Behaviour Foundation exists to demonstrate that individuals with severe learning disabilities who are described as having challenging behaviour can enjoy ordinary life opportunities when their behaviour is properly understood and appropriately managed.

The CBF has four main aims:

To provide information and support to parents/carers and professionals caring for individuals with severe learning disabilities and challenging behaviour.
To demonstrate how local support and service provision can be improved, and to actively facilitate such provision on a national basis.
To highlight the needs of those with challenging behaviour and to influence policy and practice on their behalf.
To promote research into challenging behaviour associated with severe learning disabilities and to disseminate the results of such research so that practical benefits are gained.

These aims are achieved through two main areas of work, described below as ‘information and support’ and ‘campaigning and influencing’.

With a staff team of just two full time and two part time employees, the work of the CBF this year relied considerably on the hard work of a small team of committed volunteers, both with respect to office administration and fundraising. (Estimated volunteer hours equivalent to an additional 1.3 staff members).

ACHIEVEMENTS AND PERFORMANCE

The Challenging Behaviour Foundation has been in existence for 10 years and, despite limited resources, has grown steadily during this time, building a good reputation amongst families and other stakeholders.

This year the team re-located to larger office premises. The move was successfully co-ordinated by a volunteer, ensuring minimum cost and disruption to activities.

The Challenging Behaviour Foundation continues to adopt the approach on which it was founded, based on principles of sharing expertise, partnership working, and setting priorities through listening to the daily experiences and views of families caring for individuals with severe learning disabilities and challenging behaviour.

INFORMATION AND SUPPORT

With no other organisation in the UK specialising in providing information and support to families around the understanding and effective management of challenging behaviour associated with severe learning disabilities, the Challenging Behaviour Foundation, despite its small size, is receiving calls and enquiries from families across the UK, and is now in regular contact with some 900 families, with this number increasing steadily.

“Like all families with children with any kind of disability we face significant difficulties, but we know that some of our children have the most seriously challenging behaviours one is likely to see in this country… the team at the CBF provide an invaluable, unique and highly appreciated service…” (Parent)

The reputation of the CBF continues to grow, and feedback from professionals reinforces the need for our work in making available accessible information in this specialist area:

“Having worked for the last 20 years as a paediatrician in a child development centre, I am very aware how much the challenging behaviour of many of our children impacts on their families. Unfortunately our resources in the NHS, education and social services are often inadequate to provide satisfactory support. I think your organisation is therefore very important …” (Professional)

Information and support is provided through written and DVD resources, email networks and a family linking scheme, and for the first time this year the CBF has been able to provide individual telephone support to families, thanks to grant funding from BBC Children in Need for a full time Family Support Worker.

• Information sheets

“All the information you sent was very clear, varied, interesting and most of all informative…many thanks… it’s good to know there’s this type of support around for challenging behaviour.” (Parent)

All information sheets are provided free of charge to family carers. This year, as planned, ten information sheets were reviewed and updated and a new information sheet ‘Health and Challenging Behaviour’ was produced, highlighting the need to eliminate any health causes underlying the challenging behaviour.

Targets for the coming year:
Three new information sheets to be produced on topics identified through enquiries to the CBF: Difficult sexual behaviour, Pica behaviour (eating inedible objects), and Planning for the Future. Review remaining information sheets and update as necessary."

• DVD Resources

“We are very grateful for the help received. Until now we were left on our own to struggle with almost no advice or support” (Parent)

“Particularly useful were the two experts explaining in layman’s terms the function of the behaviour” (Parent)

This year, as planned, saw the release of two new DVDs. The format of the DVDs reflects the pooling expertise and partnership approach of the CBF, by combining professional input with family experiences. In ‘Self-injurious Behaviour’, the UK’s leading authorities on self-injurious behaviour, Professors Chris Oliver and Glynis Murphy, combine with two family carers to bring practical information and advice to families. In ‘Communication and Challenging Behaviour’, interviews with four family carers and a speech and language therapist examine the link between communication and behaviour. Feedback on these resources continues to be very positive, with over 300 family carers and over 200 professionals receiving DVDs during the course of the year. (DVDs provided free of charge to family carers).

Targets for the coming year:
Completion of a new DVD title ‘Understanding the Function of Challenging Behaviour’, and to source funding for the production of further titles on identified topics to complement our written resources.

• Website

“What a great website…. I will be using this for myself, parents and colleagues…” (Health visitor and Portage worker)

“I cannot believe how brilliant this site is, thank you!! I’ve struggled with my beautiful son now for 11 years….it’s so nice knowing we’re not alone…” (Parent)

Statistics show a steady increase of visitors to the CBF website, with the average number of visitors per month being 3,800 (3,000 in 2007). All CBF information sheets are available to download free of charge from the CBF website.

Targets for the coming year:
With the website remaining the primary point of contact for the majority of both families and professionals, a review and upgrade of the website is planned as a priority, with regular updates to be introduced as capacity allows.

• Newsletter

“You are the most useful group we subscribe to – and that is quite a few!” (Parent)

“Please send me another copy of the Summer 2007 issue. It was so good I stuck my copy in an envelope immediately to send to the inquiry on health care.” (Professor of applied psychology of learning disability)

This year, as planned, saw the upgrading of the CBF newsletter to a two-colour publication with articles from external contributors. ‘Challenge’ now goes to over 900 families and over 1,500 professionals across the UK. Published three times a year, recent issues have covered topics such as health and challenging behaviour and the implications of the new Mental Capacity Act.

Targets for the coming year:
A 12-page special issue promoting local individualised support and services for individuals with challenging behaviour is planned for Spring 2008, funded by the National Lottery through the Big Lottery Fund. This will tie in with work being carried out by the Valuing People Support Team to promote the recommendations made in the revised Mansell report, published October 2007: ‘Services for people with learning disabilities and challenging behaviour or mental health needs, revised edition.’ To be mailed out widely to relevant professionals across the UK, we expect this issue to raise awareness of the work of the CBF and to reach more families in our target group.

• Support networks and family linking scheme

“I have found so much support and advice via the CBF….I think without help from your foundation I would have not known where to turn….” (Parent)

“there is actually no one better to listen and talk with than someone who also lives, breathes and hardly sleeps, 365 days a year with those with seriously challenging behaviours… I cannot stress (enough) how important this lifeline is to families….” (Parent)

“this service is invaluable to me – a way I can speak with other people who are going through similar things as myself to give me lots of support. This is a great service and I would be lost without it.” (Parent)

With many families telling us that they feel isolated in the issues that they face, the CBF parents email network and family linking scheme continue to provide an essential source of support and a means of sharing information on issues of concern. This year, as planned, saw an increase in take-up of the support offered, following a questionnaire to all family carers on our mailing list. Over 150 families are now registered on the CBF family linking scheme (70 in 2007), with around 140 parents regularly using the parents email network (60 in 2007).

Targets for the coming year:
A review of the parents’ email network to assess usefulness and mode of operation.

• Individual telephone support

“The Challenging Behaviour Foundation has been invaluable to our family as it is the only organisation that I know of that specifically addresses the needs of children like my son, who have both severe learning disabilities and challenging behaviour. Families like ours often have very isolated and difficult lives that few people understand. The CBF is unique in its knowledge and expertise of children with challenging behaviour… staff at the CBF have always been approachable and encouraging, and I know help and information is only a phone call away.” (Parent)

“thank you so much for this information and for your kind attention to our problem today…you were the only one I’d spoken to who really understood what I was talking about…” (Parent)

Since starting in post in February 2007 and without advertising that telephone support is available, the CBF Family Support Worker has responded to an average of 4 calls a week from families, many coping with very great difficulties. As well as providing information, signposting and support in understanding and managing challenging behaviour, common themes emerging have included GP lack of awareness and lack of appropriate referral, the use of medication to ‘treat’ challenging behaviour, out of area placements and insufficient access to respite/ short breaks for families caring for individuals with severely challenging behaviour.

Targets for the coming year:
Collation of information and statistics around issues identified from telephone callers to inform CBF plans and priorities. Review CBF practice against the Telephone Helplines Association Quality Standard.

CAMPAIGNING AND INFLUENCING

“Living with a child with severe learning disabilities and challenging behaviour is a profoundly hard and isolating experience, and one that seems to be largely ignored by politicians and society. The Challenging Behaviour Foundation is unique in attempting to address our needs….” (Parent)

The CBF has identified a number of issues of specific concern to families caring for individuals with severe learning disabilities and challenging behaviour. Our strategy at current capacity is to provide a 'voice' for our families through involvement in a range of Government consultations, national networks and the Learning Disability Task Force, and using our website and newsletter to raise awareness of issues.

• Improving local service provision

This year, as planned, a variety of approaches have been adopted in order to reach family carers, professionals and commissioners with information and support around the development of local specialist services and support for individuals who challenge.

Achievements include:
- the development of an information pack 'Planning for the Future’ for families caring for individuals with severe learning disabilities and challenging behaviour.
“The pack is excellent – a really comprehensive resource and bang up to date. Far superior than anything else I’ve seen.” (Parent)

- presentations at a number of key regional and national events, including organisations such as the Royal College of Psychiatrists, a large national provider organisation event and carers events.

- providing input to key national best practice guidance, including the revised Mansell report and a report by the Royal College of Psychiatrists, British Psychological Society & Royal College of Speech and Language Therapists: Challenging Behaviour: A Unified Approach.

- invitations to the CBF to be a member of a joint CSCI and Healthcare Commission group looking at commissioning learning disability services.

- leading work with Professor Jim Mansell on behalf of the Learning Disability Task Force to develop a monitoring plan for the recommendations made in the revised Mansell report (‘Services for people with learning disabilities and challenging behaviour or mental health needs, revised edition, October 2007).

- planning of a large London & SE event with the Valuing People Support Team to publicise the revised Mansell Report.

- providing individual support to a family to enable the development of a local service.

Targets for the coming year:
With requests for our ‘Planning for the Future’ pack now being received from families living outside England we are now in the process of adapting the pack for families living in Wales, Scotland and N Ireland. Autism Cymru, Autism NI and PAMIS (Dundee) have agreed to help with this project and the new packs should be available in Spring 2008.
We will explore the development of an additional DVD resource to complement the planning for the future information sheet.

• Input to the development of policy and practice

The CBF has attended a range of national meetings about various policy developments in order to ensure that the needs of people with severe learning disabilities and challenging behaviour and their families are represented.

Achievements include:

- providing written and verbal evidence to the Joint committee on Human Rights of Adults with Learning Disabilities. (‘A Life Like Any Other?’).

- providing written and verbal evidence to the Independent Inquiry on Health.

- written evidence provided to the National Carers Strategy.

- written evidence provided to Valuing People Now.

- contributing to the development of a Learning Disability Child and Adolescent Mental Health Service toolkit: ‘the CAMHS-LD Toolkit: a clinicians guide to mental health provision for children and adolescents with learning disabilities.’

- membership of national network developing benchmarking for assessment and treatment centres.

• Input to the development of policy and practice

Targets for the coming year:
The CBF will continue to respond to relevant consultations in order to draw attention to the needs of people with severe learning disabilities and challenging behaviour and their families. In the year ahead we expect these to include the Independent Living review, policy documents arising from Valuing People Now, the national carers' strategy and the inquiry into healthcare provision for people with learning disabilities.

• Promoting Research

The CBF has continued to support and encourage research relating to challenging behaviour.

Achievements include:

- advisory group member for the Help to Move On Project at the University of Bristol (Heslop, P. & Abbott, D. (2007) School's out: Pathways for young people with intellectual disabilities from out-of-area residential schools or colleges. Journal of Intellectual Disability Research 51, 489-496)

- collaboration with the University of Kent Tizard Centre, resulting in the publication of Pilling, N., McGill, P. & Cooper, V. (2007) Characteristics and experiences of children and young people with severe intellectual disabilities and challenging behaviour attending 52-week residential special schools. Journal of Intellectual Disability Research 51 (3), 184-196.

- further ongoing research supported at the Tizard Centre, including two studies presented at conferences and likely to be published.

Targets for coming year:
We are currently working with the University of Kent Tizard Centre to submit a proposal for funding from the Big Lottery for research into the impact of advocacy for families of young people approaching transition.

FINANCIAL REVIEW

Results

Incoming resources for the year amounted to £171,862 (2007: £84,403) and resources expended were £132,323 (2007: £81,439) giving net incoming resources of £39,539 (2007: £2,964).

Investment powers

Under the Memorandum and Articles of Association, the charity has the power to make any investment which the trustees see fit.

Review

The CBF is a financially growing organisation, enabling a significant expansion in our work this year. We would like to acknowledge the support received from the Sobell Foundation, The D’Oyly Carte Charitable Trust, the British Humane Association, the David Solomon’s Charitable Trust, the Souter Charitable Trust, and the Good Neighbours Trust, without whose support we could not have reached this point, also to express our thanks for the fundraising events organised by our all-volunteer fundraising team.

We are also particularly grateful to BBC Children in Need, the National Lottery and Lloyds TSB Foundation for England and Wales for their significant contributions towards salary costs, which remain our largest expense in achieving our objectives.

Our income remains highly fragile, however, being largely short-term and related to specific projects. The Trustee Board pays close attention to income and expenditure and is seeking to develop a long-term funding strategy that will ensure greater security for our activities.

Trustees have examined the charity's free reserves (that is, those funds not tied up in fixed assets and excluding those funds which have been classified as designated or restricted) and have noted that the balance held equates to approximately six months current operating expenditure, or four months operating expenditure at projected rates taking into account the anticipated increase in staffing levels . It is the Trustees' view that at this stage in the charity's development it is prudent to hold free reserves to cover nine months operating expenditure because of the uncertainty of securing continued funding for the continuation of existing projects, which are currently financed through short-term funding. It is therefore the policy of the Trustees to build reserves to this level while grant applications are made to maintain and develop the work of the charity as set out in the strategic plan, and while a long term sustainable funding strategy is developed.

PLANS FOR FUTURE PERIODS

We are delighted to have received news of new grants from the Rank Foundation and the Freemasons’ Grand Charity for support of our core costs in the coming year. Two new areas of work, long identified by the Trustee Board as areas of need, will be moved forwards in the coming year, with the successful securing of project funding:

• Parent Training

A grant from Awards for All will enable us to pilot parent training modules in understanding and managing challenging behaviour with a group of family carers. The training modules will be developed based on responses to a questionnaire to family carers in 2006, and the pilot used to explore ways in which future training can be both replicated and funded.

• Specialist advocacy

Grants from the British Institute of Learning Disabilities and from Medway Council will enable us to pilot a new approach to advocacy for individuals with severe learning disabilities and challenging behaviour. The pilot will also inform the development of a specialist advocacy training resource, funded by the Department of Health (Section 64).

Capacity building

With just two full time members of staff (Family Support Worker and Development Manager), two part time (Information Assistant, 12 hours a week, and Big Lottery Service Development Manager, 3 days a week), supported by a small team of volunteers, the CBF continues to operate at maximum capacity, receiving an increasing number of calls and enquiries each week. Following the initial difficulty in recruiting for the Big Lottery project, and the subsequent strain on the existing staff team, the Big Lottery has now approved the creation of an Administrator post, due to commence March 2008. The addition of a full-time Administrator to the Big Lottery project will increase our capacity to respond effectively to enquiries, and will enable us both to reach a larger number of families and take forward a number of identified projects.

However, both the current and predicted level of demand for our specialist information and support indicate the possible need for an additional challenging behaviour specialist staff post. Trustees are monitoring the situation and steps will be taken to identify how a number of identified areas of work, such as the development of parent training and parent training resources, the development of our parent support network and the training of volunteer parent ‘befrienders’, may be taken forward.

The CBF is exploring ways in which we may be able to both take on and offer occasional consultancy work in order to both achieve our objectives and generate some income. A recent tender to the Department of Children, Schools and Families (Aiming Higher for Disabled Children Framework) was successful, and may provide new opportunities to develop our work which have previously been beyond our reach.

International impact

The CBF was invited to give a presentation in Italy in July 2007 about the Medway Challenging Behaviour project at an international Autism conference: ‘Equal opportunities and independent living for adults with complex dependency needs and disabilities’, and to provide a day of training for staff at a large Italian institution.

An Australian NGO working in Bangladesh has written to ask if we would be prepared to dub our DVD ‘An Introduction to Challenging Behaviour’ into Bangla, and this possibility is being investigated.

Orders for our resources are now starting to reach us from Australia, the USA, Canada and elsewhere, and Trustees are monitoring such requests in order to determine need and future policy in this respect.