Consultation Response from the Consumer Financial Education Body (CFEB) to: Implementing Fulfilling and rewarding lives Consultation for statutory guidance for local authorities and NHS organisations to support implementation of the autism strategy. October 2010 Contact: Peta Cubberley, Associate Email: peta.cubberley@moneymadeclear.org.uk Tel: 0207 943 0566 www.cfebuk.org.uk
About CFEB The Consumer Financial Education Body (CFEB) has taken over the leadership of the National Strategy for Financial Capability from the Financial Services Authority (FSA). CFEB is an independent body, created in April 2010 by the Financial Services Act 2010. We are responsible for helping consumers understand financial matters and manage their finances better. We do this by providing impartial information, education and advice through a national financial advice service. CFEB welcomes the opportunity to respond to this consultation. October 2010 2
Summary of our response CFEB is responsible for helping consumers understand financial matters and manage their finances better. Our programmes aim to equip people with a sense of financial control by giving them the tools and support to develop the skills, knowledge and confidence on financial matters that they can call on for the rest of their lives. As well as our generic services, we deliver targeted programmes that are designed to help people through critical stages and events in their lives. The Autism Strategy aims to support people with autism, and their families to have fulfilling and rewarding lives in the community. It focuses on the role of Local Authorities and NHS organisations to support the delivery of the strategy. We wish to take this opportunity to highlight why the ability to understand financial matters and manage one s money better can play a key role in achieving this. There is no particular question in this consultation which addresses the issue of financial capability specifically. However, we would like to highlight how the ability to understand financial matters and manage one s money better is relevant to the strategy, and specifically in relation to chapters 3, 4 and 5 of this consultation. CFEB s work in the autism sector CFEB has been working in the Autism Sector since 2007. During this time, we have worked with Bradford-based autism charity SACAR and the National Autistic Society (NAS). These partnerships have focused on supporting the needs of individuals with autism, and their carers, to understand financial matters and manage their money better. Key issues Explored in more detail in the body of the consultation response, the key points which we wish to highlight are: There is a role for understanding financial matters and managing money better for both individuals with autism and their parents/carers when discussing strategies to support people with autism to live independently. Research shows that improved money management has a significant positive impact on wellbeing and is a contributing factor in alleviating stress, anxiety and depression 1. Chapter 3: When any assessment of needs is undertaken, the individual s and their family or carer s - ability to understand and manage money should be taken into account. This could prevent financial problems or crises arising in the future. Chapter 4: For young people who are preparing for employment, particular consideration of their understanding of money, managing money and using financial services e.g. banks, debit cards, ATMs, credit cards should be included in these support needs. Improved financial capability could also assist young people to secure and sustain employment. 1 Financial Capability and Wellbeing: Evidence from the BHPS (2009) FSA Occasional Paper Series 34, Taylor M, Jenkins S, Sacker A October 2010 3
Chapter 5: The continued roll out of the personalisation of care agenda presents opportunities and challenges for adults with autism and their parents or carers, in relation to money management skills. CFEB provides free impartial advice online (www.moneymadeclear.org.uk), over the phone and through face-to-face appointments (where available). We also provide a range of free Moneymadeclear TM printed guides covering over 35 titles including banking, budgeting and basic bank accounts. We are currently developing a mental capacity printed guide, which is being developed with input from a wide range of relevant stakeholders including the autism sector. October 2010 4
Introduction The Autism Strategy vision is to help adults with autism to achieve fulfilling and rewarding lives. It focuses on the role of Local Authorities and NHS organisations to support the strategy. We wish to take this opportunity to highlight why the ability to understand financial matters and manage one s money better can play a key role in achieving this. CFEB s programmes aim to equip people with a sense of financial control by giving them the tools and support to develop the skills, knowledge and confidence on financial matters that they can call on for the rest of their lives. We do this by providing impartial information, education and advice over the phone, online and by face-to-face appointments with money guidance professionals. As well as our generic services, we run strategic programmes that are targeted at helping people through critical stages and events in their lives. Each of the projects we deliver is thoroughly assessed for effectiveness, value for money and impact, either by our internal research team or by an external organisation. Although there is no specific question in this consultation which addresses the issue of financial capability, we would like to highlight how the ability to understand financial matters and manage one s money better is relevant to the strategy. Our response is of most relevance to chapters 3, 4 and 5 of this consultation. CFEB s work in the autism sector CFEB has been working in the Autism Sector since 2007. During this time, we have worked with Bradford-based autism charity SACAR and the National Autistic Society (NAS). Both partnerships have focused on supporting the needs of individuals with autism, and their carers, around understanding financial matters and managing their money better. Through our work, we have gained a good understanding of the issues affecting people with autism, in particular how they understand and manage money matters. To date, our work has included: 2006/2007: Development of Money Matters workshops with, and for, people with autism We funded Sacar, a charity for people with autism in Bradford to develop and deliver a programme of workshops called Money Matters that were designed with and for people with autism. Our research shows that as a result of these sessions, 70% of participants had more confidence with money, and felt this has improved their independent living skills. Sacar also created a toolkit which has been shared with local organisations. 2007/2008: Training of advisors on the NAS national helpline We funded the NAS to train their telephone advisors on money matters. The aim of this was to enable them to deliver better advice and signposting on financial and money matters to callers with concerns about financial issues. As a result of this training all advisors reported being more knowledgeable and confident about money matters and were using their knowledge to help callers ringing the helpline about October 2010 5
money matters. Feedback also showed that advisors felt that they were improving the situations of the callers they were speaking with. 2009/2010: Delivery of a series of Managing Money seminars to parents or carers of an individual on the autistic spectrum. We worked with the NAS to develop and pilot seminars on money matters. These have been delivered as part of the NAS help 2 programme. Over a hundred parents and carers attended the five pilot seminars. The evaluation of the pilots showed that parents significantly increased their knowledge on a wide range of financial topics, and that almost all of those in the qualitative research had taken at least one action to improve their money management since attending the seminar. It also showed that parents and carers experienced a change in their wellbeing following the seminar. Parents reported increases in feelings of optimism from 9% before the seminar to 49% after it, and recorded reductions in their feelings of anxiety and worry, from 66% to 24% and 56% to 25% respectively. 2009/2010: Development of a Managing Money website and associated workbook We worked with the NAS to develop and pilot a micro site targeted at individuals at the higher functioning end of the autistic spectrum to better understand money management. We would be happy to meet to share findings from the evaluation of this and the seminars. CFEB s universal offer CFEB provides free, impartial advice online and over the phone, and we also offer face-to-face appointments in a number of priority areas across the UK. From spring 2011, these will be available nationwide as part of the new national financial advice service which the Coalition Government has tasked CFEB with developing. Our website www.moneymadeclear.org.uk provides information on a range of money matters to help people to take control of their finances from everyday money to tax and benefits, to savings and investments. We also provide a range of free, jargon and sales free Moneymadeclear TM guides available in various languages covering over 35 titles. We would be pleased to discuss availability of these resources in more detail. October 2010 6
Wellbeing and money management Research by the FSA published in 2009 shows the relationship between financial capability and wellbeing using data from the British Household Panel Survey 2. The research showed that people with the highest levels of financial capability tended, on average to be older (aged 55 or over), married or widowed with no dependent children, in good health, home owners and working in a full-time permanent job. However, the research showed significant levels of financial incapability were found among certain groups, such as the young (aged under 35), those who were divorced or separated, the unemployed, lone parents with dependent children, those experiencing poor health and people living in rented accommodation. We know from working with professionals in the autism sector that many families with a child with autism are more likely to fall in the second group identified above. Anecdotal evidence from the sector suggests that many relationships break down as a result of challenges facing families raising a child with autism. We also know that some parents are unable to work due to the support needs of their child with autism. Research shows that 30% of children with ASD live in families where neither parent works, compared with 14% of the general child population 3. Not working, or only working part-time, inevitably leads to a reduced household income and an associated higher risk of lower financial capability as indicated by our research. Similarly, research by Carers UK shows strong links between being a carer, having a lower income and increased levels of ill health 4. Our research goes on to show a link between individuals having control of their finances and their psychological wellbeing 5. It showed that moving from low to average levels of financial capability improves psychological wellbeing by 5.6%, increases life satisfaction by 2.4% and decreases the likelihood of suffering from anxiety and depression by 15%. 6 Other research by the Family & Parenting Institute shows that a third of families (35 per cent) say money worries give them sleepless nights 7. We know that equipping people with the information, advice and guidance around money management, at the right time for them, can go some way to preventing financial worries, financial crises and the lower levels of wellbeing that may ensue or escalate. There is an important role for education, information, support and guidance around financial issues and money matters, reaching all people, and targeted at vulnerable groups, including the autism sector. We are happy for the response to be published. 2 Financial Capability and Wellbeing: Evidence from the BHPS, CFSA Occasional Paper Series 34, FSA, Taylor M, Jenkins S, Sacker A (2009) 3 Mental health of children and young people in Great Britain, 2004. Basingstoke: Palgrave Macmillan, p.189) (Green, H. et al, (2005) 4 Real change not short change (2007) Carers UK and Carers in Crisis (2008) Carers UK, London 5 Financial Capability and Wellbeing: Evidence from the BHPS, CFSA Occasional Paper Series 34, FSA, Taylor M, Jenkins S, Sacker A (2009) 6 FSA Occasional Paper 34, (2009) 7 Family & Parenting Institute (November 2008) October 2010 7
Our Response In this consultation response, we will be responding to the following questions: 3.5 Do you have any other comments on assessment of needs for relevant services? 4.5 Do you have any other comments on transition? 5.5 Do you have any other comments on service planning? Chapter 3: The assessment of the needs of adults with autism for relevant services. 3.5 Do you have any other comments on assessment of needs for relevant services? We welcome the recognition in the proposed guidance that: The social services department should contact the adult with autism - and any registered carers to inform them of their entitlement to an assessment and inform carers of the right to a carer s assessment. We wish to highlight here key reasons why understanding of financial matters and managing money is particularly important to a person s assessment of need. Adults affected by an Autistic Spectrum Disorder (ASD) find the process of dealing with financial matters very challenging due to heightened anxiety, lack of awareness about the value of money and difficulty managing financial responsibility. People with an ASD may also experience challenges with, for example: understanding the concept of credit and that it has to be repaid; imagining what the future will be like and what their needs will be; planning for, and coping with, changes in income and expenditure; how to budget for expenditure or to gauge the value of goods; and understanding the consequences of financial behaviour, such as spontaneous spending. In addition, the challenges people with an ASD face will vary according to the individual s needs and abilities. Financial capability support is not just pertinent for adults with an ASD. We recognise that parents and carers are also in need of additional support to understand and manage their money better. Research undertaken by the NAS in 2009 8 looked at the financial impact of having a child with autism and found it to be a significant burden to families. It showed not only a shortfall between the costs of bringing up a child with severe disabilities and benefits received, but the extent to which caring for a person with autism or Asperger 8 Loynes, F. (2000) The impact of autism: a report compiled for the All Party Parliamentary Group on Autism. London: APPGA in National Autistic Society, Information Sheet, Families: the impact of autism (2009) October 2010 8
Syndrome impacts on the carer in their ability to work. Anecdotal evidence from parents of children with autism who are in touch with the NAS, shows that a significant proportion of them are reliant on benefits, having given up their employment due to the demands of caring for their child. Other research shows that benefits designed to cover the additional costs of caring for a child with autism do not meet these financial needs 9. Support with day-to-day money management, including awareness of entitlements and how to apply for them (and get help in applying), is therefore crucial for parents and carers in order to prevent falling into challenging financial circumstances or crisis debt. Independent evaluation of the NAS Managing Money Seminars (funded by CFEB) showed that many parents have significant concerns for the future care and support of their adult child with ASD. Parents were especially interested in information around how to set up a Will and a Trust, as many had fears and concerns about how their child would cope financially after they were gone. They also welcomed information about the process of organising Third Party Mandates, Lasting Power of Attorney and other issues relevant to managing finances for people with limited mental capacity. Information about the Mental Capacity Act 2005 was also welcomed. Parents also welcomed information and recommendations around supporting a young person or adult with ASD around budgeting and money management, debt management, understanding benefit entitlements and borrowing money. They also welcomed information around where to get financial help and advice. Almost all respondents in the evaluation had taken at least one action to address some aspect of money management since attending a seminar. Information on writing a Will and setting up a Trust had the biggest impact in terms of prompting parents and carers to act following the seminar. Chapter 4. Planning in relation to the provision of relevant services to young people with autism as they become adults. 4.5 Do you have any other comments on transition? We welcome the inclusion in the strategy of a reference to: effective transition planning to include career planning, and plans for education, employment, training, transport, housing and leisure from 16 to 19 and beyond. Understanding financial matters and money management is a key life skill which can help to achieve successful transition to adulthood, particularly in order to access and sustain employment and to live independently. 9 Broach, S. et al (2003), Autism: rights in reality. London: National Autistic Society in National Autistic Society, Information Sheet, Families: the impact of autism (2009) October 2010 9
Approximately 15% of people with an ASD are in paid employment 10. This raises two issues: firstly, that the vast majority of people with an ASD are reliant on benefit income and secondly, that more could be done to support them into employment. In both cases, effective and targeted support to help individuals to manage their money and financial affairs can help to prevent young people with autism from getting into financial difficulty. This may also help young people to take advantage of job opportunities (e.g. if they have an existing bank account, or open an account following support) and sustain employment. Evidence from the evaluation of the Parents Seminars showed that parents were dealing with financial consequences of their children s condition. Anecdotal evidence from seminars and other events organised by the NAS have highlighted examples of credit card and mobile phone debt among young people and adults with autism caused by their lack of financial awareness or understanding, as well as compulsive financial behaviour. Parents or carers of people with autism will need information, guidance and advice to assist them to manage these types of behaviour. Targeted money management support for NEET young people is a key area of our current strategy. We recognise that young people with autism may be in even greater need than other young people for such support. The FSA s baseline survey, published in 2006 11, identified that those most likely to take little or no responsibility for money management 12 were predominantly young people (36 per cent of the under 20s, compared with an average of 12 per cent), those in full-time education (27 per cent) and people living in someone else s household (27 per cent). These figures highlight that young people need support in this area to help them manage their money, whether it is money they earn or receive in benefits, to teach them good and effective life skills. Chapter 5: Planning in relation to the provision of services to adults with autism 5.5 Do you have any other comments on service planning? We welcome here the recognition that: Adults with autism should be able to access personal budgets and direct payments, in line with the assessment of their needs. Our response to Question 3.5 identified that many adults affected by ASD find dealing with financial matters very challenging. This may have significant repercussions for the level of support people with an ASD need in relation to managing the financial implications of the personalisation of their care. 10 National Autistic Society, Consultation Response to A Better Future (September 2009) 11 Atkinson et al (2006) Levels of Financial Capability in the UK: Results of a baseline survey, FSA/Personal Finance Research Centre. 12 The Financial Capability Survey covered the following five components of financial capability: Making ends meet; Keeping track of your finances; Planning ahead; Choosing financial products and Staying informed about financial matters. October 2010 10
Individuals may need support to budget for their needs including managing their expenditure across the year and choosing the most appropriate financial products including bank accounts in order to receive their allowance and pay for services. These skills are also relevant to person-centred plans which require an individual to come to a view about how much control they want to have over their money, and how this can be achieved. Also relevant to this question is that there is often an assumption that families can be the first port of call for individuals who need advice and information about financial issues. Our 2006 baseline survey of financial capability demonstrated that whilst some groups of the population are more capable at managing their money, e.g. older people, on the whole there are low levels of financial capability across all sectors of society and levels of income 13. Additionally, a report on behavioural economics published by the FSA found that people can be over-reliant on the experience of friends and relatives in evaluating financial products and making judgements about planning for the future. 14 The assumption that families will be in the best position to support their relatives in managing their money, particularly in relation to personalisation of care funding individual budgets, is therefore potentially misplaced. We wish to highlight this point in the hope that steps to increase the roll-out of the personalisation of care agenda, specifically to individuals with autism, take into account their and their families needs with respect to money management support. Peta Cubberley, Associate peta.cubberley@moneymadeclear.org.uk Tel: 020 7943 0566 Published: October 2010 Consumer Financial Education Body (CFEB) 25 The North Colonnade Canary Wharf London E14 5HS External Affairs team externalaffairs@moneymadeclear.org.uk 13 Atkinson et al (2006) Levels of Financial Capability in the UK: Results of a baseline survey, FSA/Personal Finance Research Centre. 14 De Meza et al (2008) Financial Capability: A Behavioural Economics Perspective, London: FSA http://www.fsa.gov.uk/pubs/consumer-research/crpr69.pdf October 2010 11