Taking a Personal Approach: A Parents Guide to Personal Budgets

A handbook for parents of disabled children and young people receiving personal budgets

Funded by:

Who this handbook is for

This handbook is for parents and carers of disabled children and young people. Disabled children and young people may also find the information useful, although it is not written specifically for them.

How to use the handbook

This handbook contains information, examples of good practice and links to useful documents. You may want to dip into it rather than read it from cover to cover as it is a lot of information to take in. The handbook will be supported by a free eLearning package which will be available from February 2013.

The information is correct at the time of writing, but legislation is still being enacted and there may be some changes after the handbook is printed. Please take note of the ‘future changes’ box on page 45 in this handbook and check with your support worker for the most up to date information in your area.

Visit www.kids.org.uk/mip for developments and updates.

Because personal budgets for disabled children and young people are new, some of the examples in this handbook do not relate directly to personal budgets but describe experiences of using direct payments and individual budgets.

KIDS has over 40 years’ experience of working with disabled children and their families. To make sure this handbook is as useful as possible, KIDS has worked with Disability Rights UK, Daycare Trust, National Association of Families Information Services, In Control, OPM and Include Me TOO to gather together a broad range of expertise in this area.

About KIDS

KIDS was established in 1970 by John Mulcahy, a teacher who became concerned about the development of a disabled child in his class. John wanted to improve communication with the child and sought guidance from the child’s mother. This established the KIDS ethos of working in partnership with parents and carers to enable disabled children and young people to develop their skills and abilities, and to fulfil their potential, hopes and aspirations.

In 2003, KIDS merged with Kidsactive, previously known as the Handicapped Adventure Play Association (HAPA). Kidsactive was founded in 1966 by Lady Allen of Hurtwood, one of the pioneers in the field of adventure play who believed that disabled children had the right to engage in adventurous play.

KIDS is a charity which in its 40 years has pioneered a number of approaches and programmes for disabled children and young people. These include Home Learning (Portage), Parent Partnerships, Adventure Playgrounds and the inclusion of disabled children in mainstream settings.

KIDS wishes to build on this history to meet the needs and aspirations of a new generation of disabled children and young people.

In doing this KIDS will become one of the leading charities in developing both the thinking and services that create an inclusive world for disabled children, young people and their families

Contents

1. Introduction 3

2. What is personalisation? 5 3. What is a personal budget? 8

4. The process of getting a personal budget 12

5. How personal budgets can and have been used 27

6. Tips for getting the most out of your personal budget 35

7. Frequently Asked Questions 37

8. The law and personal budgets 41

9. Glossary 46

10. Useful resources 50

Important note:

Throughout this document, when we refer to parents we are referring to parents and / or carers who have parental responsibility.

When we refer to he or she this should be considered as representative of both sexes unless indicated otherwise.

We make no assumptions about the individual background and experiences of each reader.

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Being responsible for any child is rewarding and brings both joy and challenges. Being the parent or carer of a disabled child or young person brings an extra element of challenge – unique to each person – but is no less lacking in smiles and tears. The only difference is the level of support that families with disabled children may need.

Getting the right support for your family is not always easy. Decisions about the support you receive can be made by professionals rather than by you or your child. However, a new, more personal approach to assessments has been proposed by the Government which puts you and your child at the heart of planning and choosing their support. In March 2011, the Government unveiled proposals for the biggest programme of reform in education, social care and health support for disabled children and young people in 30 years. The core principle is to simplify the process of assessing each child’s needs so that they and their parents and carers have greater choice in deciding what kind of support best suits them and the ways in which they can receive it.

To test this new assessment process, the Department for Education and Department of Health selected 20 Special Educational Needs and Disability Pathfinders. These Pathfinders, made up of local authorities and their primary care trust partners, were asked to develop a more family friendly, personalised approach to providing children and young people’s services. They are also testing personal budgets which families will be able to spend on the services they choose for their child. The experiences of the pathfinders will help to shape the delivery of this approach when it is used nationally.

To support this work, KIDS was contracted by the Department for Education to develop a handbook for parents and carers of disabled children and young people to explain some of the changes taking place and how they could affect your family.

Currently there is some confusion amongst parents and carers about the changes taking place. Much is still being finalised in law, but the main points are as follows:

Health, education and care services will be legally required to work together.

For the first time, parents will be given the power to control personal budgets for their disabled children, meaning they can choose the support that is right for their child, instead of local authorities being the sole provider.

The biggest reform of special educational needs (SEN) for 30 years will also require education, health and social care services to plan services together by law – so when their children are assessed, parents will be assured they will get full provision to address their children’s needs.

Often it is not clear to parents, and to local services, who is responsible for delivering on the statement of special educational needs. Services such as speech and language therapy may appear in the statement but are funded and commissioned by local health services.

This plan is to avoid the battle that many parents have to get the support for their families, as they are often forced to go from ‘pillar to post’ between different authorities and agencies.

The intention is to reduce the delays children face by undergoing multiple assessments, which can be stressful and time-consuming.

The reforms are set out in the Government’s formal response to the public consultation on its green paper, ‘Support and Aspiration’ published in May 2012

The main elements are:• Replacing SEN statements and separate learning difficulty assessments (for older children) with a single, simpler ‘birth to 25 years’ assessment process and an education, health and care plan from 2014. Families with the plans would have the right to a personal budget for their support.

Section 1 – Introduction

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The local offer

The ‘Support and aspiration: A new approach to special educational needs and disability’ Green Paper, sets out the Government’s intention for local authorities to deliver a local offer to children and young people, from birth to 25, who are disabled or have special educational needs.1

The aim of the local offer is to help parents and young people to understand what services are available in their area and how to access them.

What do local authorities currently offer to families of disabled children and young people?

Local authorities are required to publish information about the range of services that they provide or commission, including: • The special educational provision made from school and local authority budgets• Short breaks services • Local leisure activities for young people with learning difficulties• Childcare that is suitable for disabled children • Parent Partnership services and dispute resolution services

How will this change under the local offer?

The local offer will identify the support and services available across education, health and social care. How this is done will vary from authority to authority.

As well as setting out what support and services are available, the local offer should say clearly what the criteria are for these services and how parents and carers can access a particular provision; for example, whether they can do this through a statement of special educational needs or an ‘Education, Health and Care Plan’ through schools or colleges, or directly.

The offer should be developed with children and young people, parents and carers, as well as local services, including schools, colleges, health, and social care agencies.

1 www.education.gov.uk/publications/standard/publicationDetail/Page1/CM%208027

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• Providing statutory protections comparable to those currently associated with a statement of SEN to up to 25-years-old in further education, to help young people into employment and independent living.• Local authorities and health services will be required to link up services for disabled children and young people, so they are jointly planned and commissioned.• Requiring local authorities to publish a local offer showing the support available to disabled children and young people and those with SEN, and their families. • Introducing mediation for disputes and trialling giving children the right to appeal if they are unhappy with their support.• Children would have a new legal right to seek a place at state academies and Free Schools. Local authorities would have to name the parent’s preferred school so long it was suitable.

The local offer

If your disabled child does not meet the local authority eligibility criteria for a personal budget, the local offer will be in place to support them.

All local authorities will publish a ‘local offer’ of support, so parents will know exactly what is available instead of having to fight for basic information.

Currently the plan is that all parents would be given details of: early years, school and colleges provision and transport to and from it; social care services available, including short breaks; health services, including speech and language therapy; how to access specialist support; and special and specialist school provision available – including training providers and apprenticeships.

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?Section 2 – What is personalisation?

The word personalisation is used to describe an approach to social and health care, education and support services that sees children, young people, or adults as individuals with unique skills, talents, aspirations, preferences and support needs.

Personalisation is about putting the individual person in the centre and everyone involved with that child working together as equal partners to support them and enable them to achieve their potential in all areas of life. As equal partners, the child or young person and their family are actively involved.

The idea of putting the child at the centre of planning their care and support is not itself new. What personalisation adds is the active participation of the child and their family in managing their own lives.

Personalisation is changing the relationship between professionals and individual children and their families.

Traditional services have seen children who have individual support needs as being ‘in need’. Professionals have assessed them and then allocated services and resources based on what they believe to be best for the child. Professionals have been ‘gate-keepers’ of services, money and other resources. This is known as the ‘gift model’ of service delivery.

Personalisation, also known as ‘self-directed support’, sees individual children and their families as citizens who are entitled to take control of their lives and be supported in ways which make sense to them. It is about children and families directing how they are supported.

This ‘citizenship model’ of service delivery makes it clear that children with individual needs and their families are part of the community.

The government’s responsibility is to support families and children to make the best use of what they have – their real wealth.

What is real wealth?

Real wealth is not about assessment and allocation but is about building on families strengths and ensuring that they are part of the process. Where the family has little or no real wealth, the government should assist this process.

Real wealth recognises that families know their children best and sees them as part of their local community, entitled to join in with all the things that other children do, while needing some additional support from other people, for example; information and knowledge, skilled support and expertise or just some time supporting their child.

It follows that if a child is entitled to a personal budget, it will support the family’s real wealth, promoting natural support within communities.

Why is personalisation needed?

A parent recounts her experiences of getting help for her daughter without a personalisation approach:

“In my experience, and that of other parents and carers I have spoken to, the process is not person-centred. There has been no personal choice. Every family is different and situations in families change. I felt we had no control or influence over the support we needed for my daughter. The only option being offered was to take my daughter into residential. My daughter and family want to stay as a family and my daughter needs support to be able to live her life and enjoy her life and achieve her goals.”

With personalisation, families should no longer have to worry about support not being tailored to their needs.

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Shift to Citizenship: From Gift to Entitlement © Simon Duffy 2011 (developed at In Control 2005)

Jarek is 14 and Hugo is 17, they are brothers and both disabled. Jarek and Hugo both receive support from social care but Hugo’s health issues also mean that he receives some health funding. This funding originally paid for a paediatric nurse who came in to support the Serafin family with any issues they had.

The family chose to become part of the Derbyshire Individual Budgets (IB) pilot and were supported by an Individual Budgets key worker to look at how they could use their health funding more creatively to enable the family to get more for their money.

As Mrs Serafin and her sister have both been qualified nurses, the family decided to use the funding originally used to pay for the paediatric nurse for more direct support hours. As there were no overheads, the family were able to make their funding stretch further.

Hugo also received two nights per month respite, they decided to use this funding to pay for a family break in wheelchair accessible properties, supported by family members. This experience was more beneficial for Hugo, as he was able to spend time with his family and was able to receive more hours of support this way, rather than staying away from them, it also enables the family to spend more quality time together.

The family feel that this has worked really well as they have more control over their support, the contingency fund that they have available means that they have more flexibility if they need extra support, but also requires a great deal more responsibility on behalf of the family.

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What is real wealth?

Real wealth is a concept used to describe a child and family’s resources in a holistic way. It’s not just about money. Real wealth is the sum total of a family’s resources: its financial assets, but also the connections, skills and abilities that they draw on every day as individual members of the wider community. Making best use of a family’s real wealth will maximise opportunities in their local community and make the most of a personal budget to support the child and family in ways that make sense to them.

Real wealth is made up of:

PeopleThis is about the ability to bond and communicate with others and having a loving relationship between parents and children and wider family networks. It is also about social networks; families can only thrive if they are connected to, valued by and have a sense of belonging within their local communities.

AccessFamilies need to be able to access community activities and buildings and to feel welcome there. They need good, accurate and timely information that is welcoming and inclusive. Organisations need to understand the different elements of access – physical, sensory, social, cultural and psychological – and to be flexible to make sure they are accessible to everyone.

Skills and KnowledgeReal wealth recognises that each family member has their own skills, abilities and personal qualities, including their disabled child or young person, and looks for opportunities to use and develop them. This includes building social connections and finding ways to join in with what’s happening in the community, giving people who don’t know disabled children the opportunity to discover how much disabled children have to offer.

AssetsFinancial assets may include a personal budget as well as other sources of income.

ResilienceReal wealth looks at a family’s physical, mental and emotional wellbeing – their inner strength. The other four elements of real wealth contribute to sustaining natural resilience.Events that happen to families with disabled children and the way others treat them can strengthen or weaken this resilience. Encouraging a community in which everyone both contributes and benefits supports families to develop a feeling of belonging and gives them a sense of responsibility rather than a feeling that they have a negative impact.

The Real Wealth model was first published by In Control in 2008 in: ‘A Whole Life Approach to Personalisation: Self-Directed Support for Children, Young People and Families’, Crosby N and Duffy S (2008)

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Section 3 – What is a personal budget?

“‘Personalised budgets’ is where you buy in your services and it suits the person. We have support from a local organisation and my son is able to get involved in social activities regularly. He also attends college three days a week. My son and family have really benefited from buying in the services from our local Asian Family Support Service, providing us with more flexibility and supporting the cultural needs and traditions of my son and family.” Parent

A personal budget is the total amount of money per year that children’s social services allocate to your family to meet your child’s support needs. You can choose to manage the entire budget yourself, ask someone to manage the budget on your behalf or get services from the local authority.

A personal budget gives you and your child more flexibility, choice and control over the support you use and enables you to make your own decisions as a family about what works best for you.

“I hope that personal budgets will improve the support my daughter receives and increase her access to activities and new opportunities. Personal budgets can help our children to have more aspirations met.”

Parent

Your child will only get a personal budget if he has been assessed as being eligible for social care.

In the future this will extend to children and young people who are assessed as needing specific education and health support.

The process of getting a personal budget is explained in section 4 of this handbook.

Please note that an assessed need doesn’t automatically result in a personal budget allocation or an allocation that your family will feel is appropriate in terms of the level of service it will allow you to purchase.

Personal budgets have the potential to deliver huge benefits for families, but there can sometimes be issues relating to the level of funding offered for the personal budget, even after planning and assessment.

This is why we have set out the following infomation in such detail. To help you get the best for you and your family.

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t?Other terminology

Personal budgets can be confused with individual budgets and direct payments, but these are not the same.

Individual budgets:Individual budgets were piloted in a number of local authorities. They were introduced by the Government to bring together a range of funding that disabled people may be entitled to such as: social care funding, Independent Living Fund, Supporting People, Access to Work, Disability Facilities Grant, and Independent Community Equipment Services. The sum of these separate funds is added together to create the total individual budget amount that could be spent by the individual.

Direct payments: A direct payment is a way of receiving a personal budget, in cash, so that you can choose and buy the support your child needs. Local authorities have a legal duty to offer you a direct payment, and would only refuse this if there were specific circumstances where it would not be in the child or families best interest.

What you can spend your personal budget on

The Department of Health has produced guidance about direct payments which explains how they can be spent.3

This guidance makes it clear that you can use your personal budget to buy support in a range of different ways, including:

“In discussions with individuals about how their needs might be met through direct payments, councils should be prepared to be open to new ideas and be as flexible as possible.”

Guidance on direct payments: for community care, services for carers and children’s services

2 The Community Care, Services for Carers and Children’s Services (Direct Payments) (England) Regulations,November 20093 Guidance on direct payments: for community care, services for carers and children’s services: www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_104840

For this reason, conditions should be “no more extensive, in terms or number, than is reasonably necessary.”2

For example, local authorities should not say that you can only use certain providers.

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The law says that local authorities can set “reasonable conditions” about how direct payments are spent but have to bear in mind that the aim of personal budgets and direct payments is to give families more choice and control.

• Support in your home, whether it’s equipment or help with personal and domestic activities.• Enabling social inclusion through improving access to services in the community.• Physical and mental wellbeing through, for example, fitness or cultural activities.• Short breaks, which give parents time for other things (like spending time with their other children) and give the disabled child an opportunity to do new things and maybe make new friends.

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t?If you want to use your personal budget to buy equipment, it should be something that meets your child’s assessed needs.

The local authority or health service should agree from the start who owns the equipment, who is responsible for maintaining it, and what will happen if it is no longer needed.

The guidance says that you can buy equipment to make a support package cost-effective, for example, buying a mobile phone for PAs.

You can vary the amount you spend from week to week or month to month and ‘bank’ any spare money.

Your child’s needs may fluctuate according to their health, or the times you are able to support your child may vary. You might also put some money aside to save up for a short break. The important thing is that you only spend your direct payments to achieve the outcomes agreed in your child’s support plan. The actual pattern of support does not need to be fixed in advance. This flexibility is an important aspect of having choice and control.

So, if it’s safe, legal and makes sense for your child or young person and family, include it and be prepared to talk it through with your child’s social care assessor and explain how it will achieve outcomes for your child.

Examples of things that families have used personal budgets for include:

• Activities which support your child to participate in their community, such as after-school clubs, community clubs and youth groups. You might provide someone to go with and support your child, or you could pay for training for the existing staff who run the group to learn how to support and include your child. Or your child may need some equipment to help him join in.

• Short break care or a short break residential service which gives your child an enjoyable and positive experience while also giving your family a break from the extra demands of caring for a disabled child.

• Support so that your child can join in with a family day trip or holiday.

• Activities which enable disabled children to enjoy time with their siblings and/or friends.

• Targeted activities, like Riding for the Disabled.

• Equipment or small adaptations (one-off payments).

• Employing PAs.

• The cost of activities for another young person who is providing natural support, for example, going to the cinema with your child (though not for a sibling who lives with the child).

• Sometimes, families join together and share the overall cost of an activity for a group of disabled children. For example, music lessons may be very expensive on a one-to-one basis, but if three children share the cost of a joint lesson, it becomes more affordable and the small size of the group means each child can still receive enough individual tuition.

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What you cannot spend your personal budget on

It sounds obvious, but you can’t spend money from a personal budget on anything that would put your child at risk of harm or on anything that would not clearly benefit your child.

Equally obviously, you can’t spend it on anything like alcohol, cigarettes or gambling.

You cannot use a personal budget to buy services from your local authority.

However, you can have a budget that is mixed, with your child’s needs being met in part by a local authority service and part by direct payments. In this case, the cost of the local authority service will be deducted from the budget before you receive it.

“I had a few problems with Personal Assistants (PA) as they kept having time off and leaving. I ended up contacting the disabled children’s team and asked for their support to enable us to choose and employ a family member as a PA. I am happy with having my family member as the PA as they understand my child’s needs, her triggers and family traditions and expectations. It also has increased understanding of my daughter’s additional needs among the extended family. I have help from the council who take care of most of the paperwork. All the wages are all calculated and wage slips are provided by the council and I write the cheque payments for these amounts.” Parent

Personal health budgets

Some families will receive personal health budgets as well as social care budgets.

Currently, families receiving a personal health budget can use it to:• Meet the health and wellbeing needs assessed by your child’s health professional.• Pay for care and support, therapies, products and services.• Pay for equipment as long as it is equipment that meets your child’s health needs.

It cannot be used for:• Emergency or GP services.• Anything that would put your child at risk of injury or harm.• Any activities such as gambling, debt payment, alcohol or cigarettes.

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You cannot use direct payments to buy more than four weeks’ residential accommodation at any one time or for more than a total of 120 days in any 12 month period. This time limit has been set to avoid inappropriate use of residential accommodation.

As a general rule, you cannot use a personal budget to employ a family member who lives with your child, though there may be exceptional circumstances where a local authority will agree to this. For example, if your child has:

• Specific language requirements: for example, your child does not speak English as a first language and needs someone who understands their chosen language

• A need for continuity due to impairment( e.g. complex support needs)

• A need for continuity due to life expectancy

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tSection 4 – The process of getting a personal budget

The following approach has been developed by In Control and will be useful to all children and families who need support, whether or not they are eligible for local authority services and a personal budget.

This is because it uses the personalisation approach and includes the concept of ‘real wealth’ (see section 2).

The In Control Seven Steps to self-directed support for children and young people

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There is no standard process for getting a personal budget.

Each local authority has its own way of structuring its children’s services and managing the work that has to be done to support children and families.

The availability of personal budgets varies widely across the country as the system is still being tested. in most cases access to them is limited to social care support only.

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tStep 1: Need some help

The first step is identifying that your child or young person and your family needs some help. To get a referral to the local authority’s children’s services, you can phone your local authority yourself or speak to your child’s GP, health visitor, teacher, Parent Partnership worker or youth worker. Or you could speak to a voluntary organisation such as a carers’ centre or a Centre for Independent Living.

You may feel able to go through the process of sorting out support for your child on your own as a family but it can be really useful to have someone to help you. It’s not always straightforward and having someone else to keep your spirits up and offer an objective view of what’s happening can be invaluable.

Local arrangements vary, but local authorities will be able to point you to organisations that can support you.

Step 2: What resources have I got?

This step is not just about finding out how much money you might get. It is important to discover what is already available for your child in the local community, whether it is open to all children (a universal service) or is aimed at children with additional needs (a specialised service).

Disability legislation means that universal services should be accessible for everyone and places a legal duty on providers to make reasonable adjustments for individual children who need support to access them.

There are some limitations to this; for example, if the cost of making the adjustment is prohibitive. However, many adjustments are simply about people’s attitudes and willingness to do something differently.

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tWithin these frameworks and duties, local authorities are being given the freedom to set some of the criteria on how they decide whether a child is eligible for support. However, each local authority must publish the criteria they use, and these criteria must have been subject to consultation and assessed for their impact on disabled people under equality legislation.

Approaches vary, but all local authorities use an assessment process to: • Assess the need for support.• Decide what outcomes that support should achieve for your child.• Agree how the support will be provided.

The process sometimes starts by going through a checklist with you or giving you a self-assessment questionnaire to fill in.

The answers you give will decide whether your child will have a full assessment.

Local authorities should do the initial assessment within eight working days of a child being referred to them, and the full assessment should be done within 35 working days.

The full assessment is likely to be face-to-face and looks at the needs of your child, you as parent/s, and your wider family and environment.

Family members should also be offered an assessment of their own needs; for example, a carer’s assessment. This may identify wider family needs that can also be met through a personal budget, such as the need for parents to have short breaks from their caring role.

“We had to go through assessments and these were done at our home.

I felt this was done really well as they not only involved us as parents but also my son. We received direct payments and are happy with the support we are receiv-ing as we were involved in planning what suited our son and family.” Parent

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It is vital for disabled children to be included in their own communities because that is where they have the best opportunities to make friends and build relationships, like everyone else.

There are many community-based organisations that can play a key role in involving children and their families and local authorities should be able to signpost you to them.

Sometimes specialist support will be essential, and this is when you can use a personal budget.

This is also a good time to think about your family’s ‘real wealth’.

What connections and networks do you have in your community? What are children the same age as your child doing? Can you make it happen for your child? Sometimes all you need to do is ask and people will be only too willing to help and support you.

Think also about your family’s strengths; how are you coping, physically, mentally and emotionally?

Families with disabled children can go through many ups and downs. You may need more or less support at different times and you may need to plan this into your support arrangements.

Assessing your child’s entitlement to a personal budget

If it is decided that your child is eligible for social care services, they are entitled to services through a personal budget.

There are clear legal frameworks for assessments and there are duties placed on local authorities in relation to assessing and supporting ‘children in need’.

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tAssessments should be person-centred and needs-led and not influenced by the services that happen to be available locally. The aims of the assessment are to identify what is stopping a child and their family from living an ordinary life and to work out how to overcome these difficulties.

When you are filling in a self-assessment form or attending an assessment meeting, think about the help your child needs, over and above what a typical child would need. How long does your child need this help for and how often? When you are thinking about how long something takes, remember to include the whole process. If you are asked how long it takes to help your child go to bed, it’s not simply the act of getting into bed that matters; it’s the whole process, from saying “time for bed ...”

Setting the budget

Local authorities calculate an ‘indicative budget’ or a rough estimate of how much funding will be allocated to a child, based on the information they get from the assessment.

The exact amount of money is only confirmed when the support plan, which sets out how the money will be spent, is agreed

As you plan the support your child needs it will become clear whether there is enough funding in the indicative budget. The budget must be sufficient for you to buy the support that meets your child’s assessed needs. This is the law: local authorities cannot arbitrarily put a limit on the support they provide.4 If there are any questions about the amount of the budget, it is best to talk about them during the planning process.

Many local authorities use a ‘resource allocation system’ to work out the annual budget amount, although some may do it differently. These systems are designed to allocate money fairly to all children in the local authority area.

If you can’t reach an agreement with your local authority about the amount in your child’s budget, you can use the ordinary complaints procedure within your local authority to challenge their decision, or ask for help from an advocacy service to try and speed up the process.

4 Cemented to the floor by law, Steve Broach (Barrister, Doughty Street Chambers)www.councilfordisabledchildren.org.uk/resources/our-partners-resources/cemented-to-the-floor-by-law

What is a resource allocation system?A resource allocation system is a simple set of rules which explain:• The budget available to meet the needs of a group of children and young people.• Who is eligible to have an allocation from this budget.• What this allocation must be used for.

Good practice dictates that the process is transparent and participative.

During your child’s assessment for a personal budget, your local authority will ask you to fill in a questionnaire which is used to help them to calculate an allocation of money from their budget for disabled children.

At this stage, the amount is known as an ‘indicative’ budget – an approximate amount that gives you a figure to work with while you put together your support plan. It will soon become clear, through the support planning process, whether the indicative budget is accurate; it may be too much or too little. Your local authority will agree with you the outcomes that should be achieved with your budget. Setting out the resources and outcomes early on ensures that people can plan to use their personal budget in ways and at times that suit them. The actual amount of your personal budget will be confirmed once your support plan is agreed.In some instances, the local authority may wish to restrict the things that a personal budget can be used to buy. If this is the case, the local authority should tell you about the restrictions before you create your support plan.

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tThe support plan must say how this will happen. A plan that does not meet the needs of the child will not be agreed by the local authority.

Local authorities have their own approaches to support planning and your social worker, assessor or other key worker will explain the local process to you.

What is a support plan?

A support plan is a document which is drawn up between your family and a support worker. It should describe what your child or young person wants to do, the support they will need to do it and how you will use the personal budget to make this happen. It enables you to make sure that your child gets the right type of support, in a way that works for you and your family.

Your local authority has to agree your support plan.

A good plan is written from the point of view of your child. It will say:

1. Who your child is; what he is like as a person, the things he likes to do and what’s important to him.2. Things your child wants to do or achieve that aren’t possible without support.3. What support your child and your family will need.4. How your child will stay healthy and safe.5. How your child and your family will stay in control of your own lives.6. How the support will be organised and managed, including natural support from family, friends or the community.7. What the support will cost and how you will manage the budget.8. What support (if any) you need to manage the budget.9. Your back-up plans for when the planned support isn’t available, for example if a PA is sick or there is a family emergency.10. How you will manage any areas where there are concerns about safeguarding.

The support plan should be reviewed regularly to make sure that the support is appropriate and is enabling you to manage your family’s life effectively. Changes to the support plan will only be made with your permission.

Investing time in writing a great plan can help you to think about what you want your child to achieve and to come up with ideas about how best to support your child.

It is important to focus on your child’s needs and how you want them to be met rather than thinking about what services are already available.

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Step 3: Making a plan

Local authorities have a legal duty to make sure that your child’s assessed needs are being met, regardless of how you choose to arrangesupport for your child.

Writing a support plan

Many families are now writing their own plans, often with support from a local authority worker, someone from a user-led organisation or another provider, such as a carers’ centre.

Local knowledge, creativity and flexibility are important for writing good plans that make the most of your family’s real wealth. If the support plan is not written by your family, it is essential that your family is at least an equal partner in the process.

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If one of your child’s needs is to make friends and build relationships in the local community, there are lots of different ways of doing this depending on your child’s interests and preferences, for example:

• Your child might like someone to support him at an existing group or club.• You might already know some young people who will voluntarily support your child to do things in the local community and could use the personal budget to pay their expenses.

Planning is also your opportunity to identify problems and think creatively about solutions.

If you want to try something new that makes sense to you and your child, even if it may not seem like an obvious solution to someone else, why not give it a go?

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Some prompts to help you think about support planning:

1. Ask what’s working and what’s not working – for your child, for you, for any siblings, for anyone else involved? Remember each of these people may have a different view on whether the same support is working or not. A personal budget should support the family, but is really about the child or young person first and foremost. You could think about why some things are going well; is it the people involved, or their attitude, or because it’s something your child loves to do? Where things aren’t working well, do you need to fix them, stop them, or change them?

2. Think about what’s important to you and what’s important for your child. Personal care and safety, which are important for your child, have to be managed, but so too do the things that make life worth living – the things that are important to your child. This will be very individual. These are the things that make your child feel happy and fulfilled and safeguard his emotional and mental wellbeing.

3. The support plan that is written as a result of the resource allocation system needs to be as detailed as possible. Make sure you clearly show the need and what the outcome will be. This will help make the case for getting the best type of support that is suitable for you.

The checklist opposite may give you some ideas on what is possible to include in your plan.

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tSupporting children’s cultural needs: a checklist for parents and carers

All children are individuals and have the right to have their personal, social, emotional and cultural needs met. This checklist, produced by Include Me TOO with black and minority ethnic parents, will help you to think about what to include when writing your support plan.

Interests and hobbies, for example:• TablaorAfricandrumming• Islamicartsandstudies• Irish,Bollywoodorbangradancing• Yogaandmeditation• Makingculturalgarmentsandaccessories

Personal care, for example:• Preferencetowashinrunningwater• Bathingorwashingbyacarerofthesamegender• Useofabidet,wetwipesorawaterbottleinthetoilet• Anyspecificcreams,lotionsandoilsusedforskincare

Hair careIf there is a particular way your child’s hair needs to be looked after and worn due to their faith and culture, such as guti or joora (bun), share the importance of this as it is key to supporting your child’s identity. Youmayalsowanttohighlightthehelpneededtodothis,includingcertainhaircreamsand oils (this information would be useful to give to Personal Assistants).

Eating and drinkingBeclearaboutanyculturaldietaryneedsyourchildhas,suchasHalalorKoshermeat,vegetarianism and separate food preparation.

Share how your child prefers to eat their food as part of their culture and family traditions, for example:• Eatingwiththeirhandsandnotusingcutlery• Usingdifferentutensils,chopsticksorspeciallydesignedeatingaids• Somechildrenmayobservetherighthand/lefthandruleofhygieneinwhichthe left hand is used for personal cleaning and therefore not used to eat with

Dressing and appearance, for example:• SomeMuslimgirlsmaywanttoweartheheadscarforhijab• Somefamilieswanttheirchildtocovercertainpartsofthebodysuchasarmsor legs• ChildrenfromaSouthAsianbackgroundmaywearasalwarkameezorkurta pyjama (traditional tunic and trousers)• Yourchildmaywearjewellerythatissymbolic,sentimentalorpartoftheir identitysuchasacrucifixforCatholicsortheKara(asteelbangle)foraSikhchild.

Religion and beliefsInclude Me TOO believes the spiritual wellbeing of disabled children, young people and their families is equally as important as their physical, mental and emotional wellbeing. Children must be supported to participate in their religious and cultural activities.

Share any information that you may feel is relevant to your child’s support.

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tStep 4: Agreeing the plan

This should be quite straightforward, particularly if you have been working in partnership with your local authority. They will check that your plan will meet all your child’s assessed needs, that you’ve covered health and safety and risk situations and that the way you’re planning to manage the personal budget is acceptable. If you are going to use a provider to get support, the local authority will want to be sure they are an honest organisation.

When the plan is agreed, you are likely to have to sign an agreement about how the personal budget will be managed and the arrangements for repaying any surplus.

Step 5: Managing my support

Looking after the money

Personal budgets can be managed in four ways:

1. You can receive it as a direct payment, to:• Someone who has parental responsibility.• The young person, if they are over 16 and able to take this responsibility.• A group of people, such as family members or a legal trust (see glossary for definition).• Someone else, such a family member who you trust. This is legally defined in direct payment legislation as a ‘suitable person’.

2. The local authority can manage the budget for you (a ‘virtual budget’). There may be some limits to the services you can buy using this method of management.

3. A third party can manage it for you; for example, a service provider, a user-led organisation or a broker (see glossary for definitions). They can only spend it to manage and deliver your services. Most local authorities will deal with ‘direct payment support organisations’ which is a general term for charities, user-led organisations, social enterprises and other organisations who provide the support needed for direct payments and personal budgets.

4. You can have a mixed budget which is a combination of direct payments and services provided by either the local authority or an independent provider.

If you use direct payments, your local authority will have its own rules and procedures about where you keep the money, how often you receive instalments, and how you account for your direct payment spending.

Generally, it must be kept in a bank account that is separate from other money, like benefits and personal income. This makes it easy for you to manage and for the local authority to audit how you spend it.

Some local authorities ask for copies of bank statements and for all receipts and invoices to be sent to them at regular intervals, but your own local authority will let you know what monitoring arrangements it has.

After the first few months, budgets are usually allocated for a year, so it is a good idea to plan a weekly or monthly budget so that the money is spent reasonably within the year. You may decide to keep some money to one side as a contingency fund in case of an unplanned problem; for example, if a family member who provides support is ill or you need extra support for a weekend break or particular activities. Local authorities tend to limit the amount you can carry forward as contingency from one year to the next.

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tyourself or you can pay a provider to do everything for you, or you can do something in between.

You can also mix and match to get the most appropriate support. So you might employ someone yourself to support your child at a local club, use a local authority play scheme for a week in the summer holidays and pay expenses for a volunteer sixth former to take your child swimming.

Your local authority will be able to give you a list of local providers, but there are likely to be many other options which you will find out about through your friends or support networks.

“My daughter has been attending a fantastic community based organisation for nearly seven years. I chose them because of their cultural service and support they offer. It took me six months to get direct payments and it was difficult as I did not have any social worker. I went to this organisation who supported me to successfully receive direct payments for my daughter.” Parent

However, you will have complete control over what is stated in the contract in terms of the work you want them to do and the hours they work.

You could consider employing a young person to support your child. Many 16 – 18 year old students want regular work and you won’t have to pay tax and national insurance unless they earn over the threshold for tax each year (£8,105 in 2012–13 but get up-to-date advice on this when you are writing your plan).

Your child might prefer being supported by someone closer to their own age group who may have similar interests. As with most young people, young disabled people often prefer to go out socially with someone of a similar age, as they have more in common. It also makes the relationship of disabled person and PA look less obvious, which many disabled young people prefer, as they do not want to be seen in their communities as ‘different’.

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The local authority will carry out an annual review of the support plan and overall budget allocation.

Because budgets are allocated to people throughout the year, this can take place at any time of year; ask your social worker or support worker. This is the time when you may have to pay back any money in excess of the contingency amount. See the Frequently Asked Questions section for more information.

Getting the support you want

It is up to you how you arrange the support for your child. You can decide to do everything

Doing it yourself

The advantage of doing it yourself is the freedom and flexibility it gives you, as well as saving on management fees and other overheads that providers have to include in their charges.

You have direct control over who supports your child, what hours they work, and how they work.

The potential disadvantage is that you will need the time and skills to do it and will be taking on more responsibility. Some families worry that it would be too difficult or demanding, but there are ways to get help. There are many families who find it a very rewarding and positive solution to their child’s care needs.

If you employ someone directly, you will be responsible as an employer for paying their income tax and national insurance contributions, as well as other benefits such as maternity or sick pay, ensuring that health and safety regulations are followed and that any employee’s rights are respected under UK law.

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tEmploying a self-employed worker

You could also find someone to support your child on a self-employed basis.

This means you do not have to deal withissues such as holiday and sick pay, tax and national insurance.

It is important to check this with your local authority as some do not allow this.

Recruiting a Personal Assistant (PA)

Employing someone, and the responsibility that it brings, can seem like a daunting task but there are organisations that support and advise small employers with things like payroll, employment contracts, Criminal Records Bureau checks and insurance.

In many areas, these services are available through a User-Led Organisation, such as a Centre for Independent Living. Some employer insurance companies provide free employment law advice as part of the insurance. Or you may have friends or relatives with particular skills who will be willing to help.

Further guidance about employing a PA can be found at:www.skillsforcare.org.uk/individualemployers

If you decide to contract a self-employed worker, make sure you check that their work will be classed as self-employed by Her Majesty’s Revenue and Customs. There have been a few cases where self-employed workers have been found to be employed and the family who hired them has been asked to pay for outstanding tax and national insurance, which had not been budgeted for.

There is an online guide to self-employed status that tells you whether a person is self-employed or not at: www.hmrc.gov.uk/employment-status/index.htm

Whether you employ someone or recruit a self-employed worker, it is important that you get good references and that each person has a Criminal Records Bureau check to ensure your family can trust the people working for you.

Think about the personal attributes a PA should have if they are going to support your child in the best way possible. Use interviews to ask about them, as well as previous experience, training and personal interests.

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A self-employed worker is responsible for:

• Providing an agreement which gives information on how much they are charging and how they will invoice.• Providing a written statement confirming that they are responsible for paying their own tax and national insurance.• Funding their own training, including ensuring that they are trained to carry out the service they are offering.• Providing a written statement that they have appropriate insurance indemnity cover, and undertaking and meeting the costs of an enhanced disclosure check. • Deciding what work to do, how and when and where they will provide their services.

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tUsingasupportprovider

There are several types of support provider, including profit-making companies, not-for-profit companies or registered charities and co-operatives. The first two can range in size from small, local organisations to national organisations with a huge stock of buildings and large numbers of staff. They may offer home-based or community services or provide residential services.

Co-operatives are organisations where the people who benefit from the work of the organisation also own and run it. This means that families can join together to run a co-operative business that provides support to their own family members, so sharing the responsibilities and the support.

The advantage of using a provider is that it saves you time and reduces your responsibilities. The potential disadvantages are the extra costs and the reduced control; you may not be able to have the same person all the time, or you may have to compromise on the hours they work, and you may not have much choice over who is employed to support your child.

If you choose to use a provider, make sure you get agreement from them about the following:

• Having consistent staff (if that is important to you and your child).• Your involvement in the recruitment process if someone new is being appointed.• The cost of the support and how much the overheads and administration costs are; do you have any say about staff payment rates?• Will VAT be charged and is this included in any prices they quote you?• What happens if your support person is absent or goes on training? Will this add to your costs?• What happens if your support person just doesn’t feel like a good match with your child and family?• How the support person will be managed day-to-day and longer term, for example, one-to-ones and performance reviews. How will you and your child be involved?• The procedure for you to deal with any dispute.

“My daughter needed support at weekends and we wanted to access direct payments. However, we were not able to get an assessment done by social services. We had to go through another agency who helped us with all the different stages of managing direct payments. This included help with interviewing and employing a PA, choice of the hours and the pay.

It was very important we employed the right person, someone we could trust and who was reliable to provide personal assistance to my daughter. We were more than happy to have outside assistance to make this happen, including help with payments. The agency lets us know how much we need to pay the PA and gave us a chequebook. All we have to do is write the cheque each month for the amounts they have worked out.

It’s made my daughter’s life easier and now I have more time and don’t need to stress about going out anywhere and having my own time. I have my peace of mind.” Parent

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tStep 6: Living my life

This is the step that makes all the meetings, assessments and planning worth the time and effort. Your child will not only be safe and healthy but also going out and about, enjoying life, achieving things alongside other children, and contributing to the life of the local community by being there and taking part in what’s going on locally

To be included, your child needs to be able to go to the same places as non-disabled children. If disabled children aren’t involved in these local activities, other people might not notice they are missing; if you actively enable your child to join in with everyone else, people will learn that it is possible for all children to be involved and will help you and others to think of ways to make it happen. This is one of the key values of using a Personal Budget.

“It took me over a year to receive direct payments for my son who is a young adult. We looked at many services and centres and none of them offered the support we were looking for.

Now, we are really happy and feel the services and support we receive from a community-based organisation are ideal. If we did not have this organisation it would have been difficult as an Asian family to find support four days a week for my son. This service has retained its community and cultural roots and understands our needs and it really is lovely to be able to talk to everyone in my language. This helps me plan with my son and I really feel involved and listened to. Our family way of life and culture and beliefs are very important to my son and us as a family.” Parent

One of the big issues confronting families with disabled children is the difficulty children sometimes have in making and sustaining friendships. Usually, there are far more people in their lives who are paid to be there (such as support staff, therapists, teachers, the GP and the dentist) than there are friends.

You may decide to set up a circle of friends, sometimes also known as a circle of support. This is a group of people who care about your child who meet together to help them and you to think about their ongoing support. A circle can be really helpful when you are dealing with a particular problem or facing a significant change, such as moving from primary to secondary school, or transition from children’s to adults’ services. The circle can be organised formally or informally, according to what works best for you.

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Creating a circle of support

Circles of support should be controlled as far as possible by the person they are set up by/for. This person is sometimes known as the focus person.

It is appropriate to create a circle on behalf of your child if they are unable to request one, or perhaps are too young. In fact, a circle can be very useful in these situations.

Members of the circle will help with decisions, give their opinions and can suggest alternative options which can be especially useful when the focus person (or their family) needs support to make decisions.

The circle can also provide a supportive group with whom to have some of the first teenage experiences – going bowling, going for a pizza or a drink – simple things which many disabled young people don’t get to do. This is why the circle is sometimes known as a circle of friends.

An aim of the circle might be to get out and about and meet more people to add to the circle.

Circles are also useful for young disabled people who are already independent but would like some support.

Professionals or people with specific skills can be involved in circles of support in the short to medium term if they can offer help on something the focus person needs. For example, someone who has a successful personal budget could be invited to give advice or talk about their experiences, or perhaps an employment specialist could attend in their professional capacity.

It is not mandatory to have parents as part of the circle, in fact some young people might be reluctant to be involved if the circle is seen as an idea of the parents.

The circle should always be in the best interests of the focus person, and they may well feel begin to feel more comfortable inviting their parents in time as their confidence improves.

In ordinary circumstances being part of a circle is voluntary and unpaid, but all members should be fully committed to the focus person (including the focus person themselves!)

It’s really important that the circle keeps in mind what the focus person wants, or would want given the option.

Parents and children often disagree about what’s best. When these decisions concern bigger issues like school / college / employment, where to live, who to see, or perhaps going on holidays with friends.

The circle can be involved to consider how the young person’s wishes can be met while still keeping them safe and happy in the longer term.

The circle should help everyone to find a balance and feel happy with the outcome.

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tStep 7: Review, change and agree

Whatever choices you have made about the type of support to use, as life progresses, your child and your family will be experiencing change, trying new things and learning more about what works and what doesn’t work for your child and family. You may need ongoing support yourself. It might simply be information about what’s available locally and new opportunities as they arise. At other times, it may be support to manage through a particular problem or a crisis. You will need to adapt and change your child’s support as he grows older and develops new skills and interests.

It is helpful to make a note of changes as they happen and jot down ideas about new things you might try. The support plan isn’t meant to be put away in a drawer and not looked at again for a year; go through it from time to time and make notes on it to help you when you come to formally reviewing it with your local authority.

If you are managing a PA yourself, or are involved in a PA’s performance review, this is a great opportunity to discuss what’s working or not working for your child, for you as a family and the PA. Involve the PA in thinking about how your child’s life could be even better, about new things to try or new places to go.

The review process

Local authorities are required to carry out formal reviews of the personal budgets they allocate and the way they do this varies from area to area. They should tell you how frequent your reviews will be when your personal budget is agreed. Reviews may be more frequent when your personal budget is first agreed as you are more likely to need support with it in the early days. If your child’s needs are likely to change or fluctuate, the reviews may also be more frequent.

The review should refer back to the outcomes in the support plan and discuss whether the current support arrangements are achieving or working towards those outcomes. You may have achieved some of your outcomes and want to write new ones that will enable your child to continue to develop and progress. Or you may have realised that an outcome identified at the beginning wasn’t realistic enough or was simply not the best outcome to work towards. Things change, and that’s fine.

The review should be used to learn about how things can be improved, whether through chang-es in the support provided, trying new opportu-nities, or using the budget or other resources more effectively. There may have been a change in your circumstances which means that you need more or less in your child’s personal budget and this is one of the reasons why it is important to keep good records throughout the year to show how you have spent the budget.

These are the sorts of things your local authority will want to check during a review meeting:

• Have your child’s needs changed? If so, they should be reassessed and the amount in the personal budget should be reviewed.• Is the amount of money reasonably enough to pay for the services your child needs? • Has the money been spent on things that achieve the outcomes identified in your child’s support plan and have you spent it cost- effectively? If any has not, the local authority may ask you to repay it. • Has your child received the services you’ve paid for? • Are you still happy to manage your child’s personal budget or do you need any help? And are you acting in your child’s best interests?

Part of the review process is the financial audit of the budget which tends to happen separately through the local authority’s finance department. They will tell you what evidence you must submit. Your social worker or social care assessor will be told about the outcomes of the audit. If an organisation manages the money on your family’s behalf, you should check to see if they will complete the audit as part of this service.

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tTheflowchartbelowoutlinessomeoftheprocessesinvolvedingettingapersonalbudget.

Assessment

Eligible?

Direct Payments Direct Services

Agreed Support Plan

(including natural and community

support)

Support Plan (agreed view of

what additional support is needed)

Funding Panel and/or Resource

Allocation System propose an

indicative budget

Funding agreed and agreement signed

Services agreed. To be provided

by the local authority (virtual

budget) or an independent pro-vider (individual

service fund)

Services are provided

Support Plan (agreed view of

what additional support is needed)

Start-up funding paid

Open bank account

Recruit personal assistants and/or start to access

services

Regular payments

First review—short-term, to check

everything’s going OK

Ongoing monitoring and reviews, usually 6 monthly, then

annual

NB: families need to do some thinking/

planning to inform the assessment and LA

care plan but the support plan can’t be written properly until

families know the budget they are

working to.

Direct Payments or Direct Services?

Yes

Signposting to information, advice and

services available to everyone

No

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Section 5 – How personal budgets can and have been used

Understanding what a personal budget can be used for may help your family to make the choices that suit you and meet your child’s needs in the best possible way. The rules about what personal budgets can and cannot be spent on are outlined in section 3. This section gives some real life examples of the uses of personal budgets.

Case studies and experiences from families who have used direct payments and individual budgets

These case studies describe how some families have used personal budgets in imaginative ways to meet the needs of their disabled child or children.

The case studies have been collected from across England and are from a diverse range of families who have children with a variety of impairments. Most are drawn from social care budgets as education and health budgets are still very new. In some cases a blend of health and social care budgets has been used to create an individual budget (see glossary for definition) that gives the child more flexibility in what they can do.

Each child and family is unique and will live in a community with access to different services. These examples should not be viewed as the best possible way for all families to use a personal budget. In fact, we have included some examples of how personal budgets have not been successful and some thoughts about how changes can be made to make sure the experience is better in the future.

We have split the case studies into several themes:• Children and young people with small budgets (under £1,000)• Children and young people with large budgets (over £1,000)• Families with more than one disabled child• Families with disabled parents and disabled children• Budgets including funding from Health or Education• Budgets managed by an organisation or individual outside the family • Young disabled people managing budgets for themselves• Families who have experienced issues with their budget allocation

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1. Children and young people with small budgets (under £1,000)

Small budgets may seem to offer limited options, but used imaginatively they can be a source of freedom and the opportunity to take up activities that might not have been accessible before

Iyrena lives at home with her mum, dad and brother. Her mum had the following to say about personal budgets:

“We were originally on direct payments but I wasn’t too happy with this ... it changed all the time. A worker came out and explained everything. We then went to a meeting with other families. We did support planning. We enjoyed that – it helped you make sense of it. We were told how much money we would have. I thought, ‘Yes, I can get on with it now.’

We got the right person to support Iyrena. As a family, we love camping so we updated some of the equipment we had. We go camping lots and lots of weekends throughout the year.

Iyrena is a great dancer and goes to the local community centre with her eighteen-year-old PA. She loves going to the Zumba class. Iyrena has such a good relationship with her PA – she looks up to her. Iyrena is following a healthy eating plan. This, together with her dance classes, helps her to stay fit and healthy.

We wouldn’t change anything. The money came in quickly so we could get on with it. It has been spot on and it is easy to get on and do it. We would welcome any opportunity to help think about future plans and other ways the budget can be spent. Having the budget made me happier than before.”

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2. Children and young people with large budgets (over £1,000)

Large budgets will be awarded due to the higher level of support the family requires. This large budget can offer families more scope to meet their needs.

Deanna is 10 years old. She has multiple impairments, including communication difficulties with no speech, physical impairments which affect both her fine and gross motor skills, sensory impairments and epilepsy.

In winter 2009, Deanna’s family got a letter from social services asking if they were interested in being part of an individual budget pilot. The family attended a two day workshop along with social workers and other parents, learning how to plan and work out outcomes and spending.

How the family spends their budget depends all on the outcomes that have been agreed for their child. Direct payments was all about paying for carers — a person, or a club, whereas “individual budgets is much more flexible and you can spend it on anything as long as it is meeting outcomes for the child .You can buy equipment so, for instance, we could buy a bike. You have to think about your child, their needs and the Every Child Matters outcomes.”

A lot of it is PA time in holidays and at weekends. This gives Deanna one-to-one time with another adult. She goes out and enjoys a variety of activities whilst her family has time away from their caring responsibilities. The PA can also come along to family events to support Deanna so the whole family can attend functions and days out with friends.

The plan has made the extended family understand who Deanna is and what her family wants for her future. They are all now seeing Deanna as a child first and seeing they can all have a vital role in her life. The plan can be used within school — the school can transfer information within the plan straight onto their paperwork. Everyone can work together to support Deanna, focusing on the same goals. The plan is sent to the clubs that Deanna attends so they too can understand her and work with her effectively. There is real partnership working to ensure Deanna is at the centre.

Since having an individual budget, the whole family’s confidence in caring for Deanna has increased, because she is getting the care she needs in a way that suits the family. Everyone is a lot more relaxed, refreshed and energised.

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d3. Families with more than one disabled child

It can sometimes make sense to pool the allocated funding for more than one disabled child in order to maximise the way it is used.

This should not mean that resources are allocated just to save money. Each child will be recognised as having specific needs that are individual to them and should be funded accordingly. For some, pooling the funding may not be appropriate if the range of needs is very different, but it is worth considering even if eventually the decision is made not to go ahead.

Daisy (8) and her brother Tim (7) both have a diagnosis of autistic spectrum disorder and live with their grandparents.

In September 2009 Tim and Daisy’s grandmother self referred to the disabled children’s team following the death of their grandfather because she had reached a crisis point where she felt unable to continue caring for her grandchildren.

A number of temporary measures were put in place to help the children to remain with their grandmother. This meant the family was dealing with a wide range of providers that had been selected by the local authority.

Daisy and Tim joined the individual budgets pilot, with a view to giving the family the opportunity to choose how they would like to meet their needs. A joint person-centred plan was drawn up as well as considering their grandmother’s needs as a carer.

The family chose to consolidate their support and to manage their own services. The family receives direct payments which they use to pay a childminder before and after school, and for a monthly two-night break. The residential weekends were negotiated and agreed between the family and the childminder, and provide excellent value for money.

4. Families with disabled parents and disabled children

Sometimes disabled children have parents who are also disabled and require assistance them-selves in order to have a fulfilling family life. In most instances they should already be receiving the support they need, although this might not always be the case.

The individual needs of each family member have to be considered as well as looking at the family’s needs as a whole. This is no different from looking at any other family with a disabled child; each one is unique and requires a tailored response.

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Milo, a 13 month old child, was referred to a key worker service by his health visitor who had concerns over his physical abilities and developmental delay. The health visitor felt that the family needed support with attending appointments, getting information about what was available, applying for benefits and emotional support.

The key worker carried out a number of actions to support the family. She chased up previous referrals, ensured that the family was on the right waiting lists for their needs and arranged an appointment with the paediatrician, which she attended to provide emotional support. She carried out joint visits with other professionals to support the family to advocate for themselves.

On the family’s behalf she applied for Disability Living Allowance and funding for a specialist holiday, short breaks and sensory equipment. She also made a referral to an educational psychologist.

Information was given to the parents about other support that was available, such as the Dads’ group and the Parents’ Forum. The family regularly attends the trips that are organised by the key worker service and now have a network of support from other parents.

The family feels well supported and has a good relationship with their key worker. They are receiving all entitlements such as high rate Disability Living Allowance, a blue badge and direct payments. All appointments are now being attended by the family and the key worker offers emotional support when needed. The parents are more confident in advocating for themselves.

5. Budgetsincludefundingfromhealthandeducation

Health and education budgets for disabled children and young people are still being piloted. Under the proposed Single Assessment Process, health, social care and education budgets will be brought together to support disabled children in every aspect of their lives. This is intended to make it easier for families to access services, with a combined Education, Health and Care Plan ensuring that all services know about a family’s needs and work together to provide a seamless experience.

Carl is a young disabled person with learning difficulties and physical impairments. He has a health budget to support his aim to work towards independent living.

The budget has been used to:• Employ two PAs to go out and about with him, develop life skills and take part in social and volunteering activities.• Pay for a buddy to accompany Carl to twice-weekly martial arts sessions, to summer camp, and to buy equipment for this sport.• Employ a specialist PA to support Carl with work experience tasters.• Enjoy visits to a theme park with family and friends. • Take part in a family holiday and short breaks.• Attend a training course on making animated films to support his interest in action figures and role play and buy equipment and software to support this training.• Cover employer liability insurance, Criminal Record Bureau checks and PA holiday pay.

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d6. Budgetsmanagedbyanorganisationorindividualoutsidethefamily

For some families, managing a budget themselves is not something they wish to, or are able to do. These families can instead choose to ask someone else to manage their budget for them; for example, a key worker, trust, or service provider (see glossary for definitions).

Sabine is a 16 year old young woman who has Down’s Syndrome and associated learning difficulties, she and her family were involved in a personal budget pilot. They chose to manage their budget with the support of a key worker.

The original amount of support she received paid for four hours with her PA and she also attended two youth groups. Following the pilot, Sabine’s budget was increased so that she could employ the PA for eight hours per week, giving her mum and dad some time together at weekends.They also used their budget to pay for family gym membership and driving lessons for her older brother. The driving lessons have been hugely beneficial for the family because it means Sabine can rely on her brother as well as her parents and he can help in an emergency, for example if the school bus doesn’t turn up. It also means that Sabine and her brother can go out together.

The key worker took the lead on support planning and the social worker worked closely with her to ensure that the support plan was agreed. Both the social worker and the key worker knew the family well before the pilot and had a good relationship with the family.

The family felt that the support planning was very positive and helped them to be realistic. They had not realised the impact of things like the disruption of routine and this helped them to see how the stresses of everyday life could be managed better. The family felt that it was crucial that the person supporting the planning knew them really well and could prompt them and think creatively about how things could be improved.

This family felt that although the key worker would be the appropriate professional to do the support planning, they would need a social worker to complete the figures and get the budget approved.

The impact of the personal budget for Sabine’s transition from children’s to adults’ service was very positive. When she was allocated her adult social worker, the support planning was shared and it enabled the new worker to get a good picture of the family. The budget was agreed quickly when Sabine turned 18.

7. Youngdisabledpeoplemanagingbudgetsforthemselves

All children undergo periods of transition throughout their lives. These can be measured in milestones such as first attending nursery, primary or secondary school, as well as the other more subtle changes that occur as children grow and develop into young people.

Disabled children and young people can experience additional periods of transition that non-disabled children will not experience; for example, from children’s services to adult services.

This can be a difficult time as your child faces the new challenge of becoming a young disabled adult with additional support needs that may no longer be covered by a budget given to them by children’s services.

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“Our children’s transitions were not smooth. There is nothing really available to disabled young people over 19 years old for their age group in regards to activities they can take part in.

Thankfully we managed to access direct payments. If our children didn’t have direct payments then life for them and us as a family would be very different and they would have nothing to do.” Parent

At this stage, your child may choose to manage their own budget or you as a family may need to continue to manage the budget on their behalf.

It can be hard to let go, but it is important to let your child try to take control of their life, even if they sometimes go wrong. It is natural to make mistakes and they can be valuable learning experiences as long as the outcome isn’t too serious.

Fi is 20 years old and is in her second year at university, studying Economics. She also has cerebral palsy.

Fi found out about direct payments and personal budgets through her personal tutor at her college who was supportive and wanted to help her lead an independent life as a university student.

After finishing her A-levels and enrolling at university, Fi and her family started the process of receiving direct payments. Getting into the system was the hardest part and also took the longest time.

At first, Fi used an agency, which wasn’t the best experience. She had 12 different carers in her first year, which resulted in a lack of consistency. Carers wore a uniform and gloves and were not flexible about the times they would come. This was a very impersonal experience which made Fi decide to employ her own PA.

She used the internal job search facilities at her university to advertise her PA job and now has a team of three PAs who are all fellow students living on campus or nearby.

Another advantage of managing her own support is that Fi has control over when she spends her direct payment money, which was impossible with the agency. During term breaks, she stays with her family and does not use a PA. This way, she can build up money to use at other times. Fi is banking money so she can go on holiday with PA support. This was not possible before.

Having a personal budget has given Fi complete independence from home and put her family’s mind at rest, knowing that she has the support she requires. As Fi has recruited her PAs herself, she is in control of choosing the support she receives.

Fi wouldn’t choose what is not right for her and this gives the family reassurance too.

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d8. Families that have experienced issues with budget allocation

Sometimes, the indicative budget generated through a resource allocation system proves not to be enough when a family goes through the process of planning support.

Kalpna is aged 14 and lives with her family, she has a number of sensory impairments and epilepsy.

Kalpna’s personal budget included funding for 21 overnight stays at a local residential setting, which her family did not take up as it did not meet their needs. They asked to be placed on the list for shared care, where Kalpna would stay with another family instead.

Kalpna’s needs had to be assessed. The assessment was done by a third party, but Kalpna’s social worker was present and ensured the right level of need was recorded.

“It would have been easy to play down the effect of Kalpna’s impairments and the social worker encouraged us to think of everyday situations that demonstrated her needs.”

Kalpna’s local authority used a resource allocation system which allocates points to a person’s individual needs and then converts those points into pounds. The family was told that £7,700 had been allocated to Kalpna as an indicative budget; the next step was to write the support plan showing how this budget would be used. However, Kalpna’s family realised that the indicative budget didn’t match their local authority’s usual pounds per point practice. They were told that the budget had been capped because they had not previously taken up the 21 nights’ residential service they were allocated. However, the family were told that if the need could be justified within the plan, a higher amount could be agreed. The family wrote the plan and shared it with the social worker. Kalpna’s mum, dad and social worker took the plan to the panel for approval. Because the plan clearly showed need and outcomes it was agreed instantly; the indicative allocation was increased to £12,000.

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Section 6 – Tips for getting the most out of your personal budgetThe following suggestions came from consultation by Include Me TOO with over 70 black and minority ethnic families through outreach community sessions. Our discussions with a variety of families from all backgrounds show that these suggestions are relevant to everyone, as these principles apply to all families looking to gain support:

Top tips for parents and carers

1. Make sure you contribute fully during the assessment and planning process. Ensure that a social worker or key worker is able to support you so that nothing is missed.

2. Be very clear about what your child’s and family’s needs are and what support you require.

3. Value your skills and expertise as parents/carers. Your knowledge, advice, experiences and ideas are essential in all decisions, assessments and planning for your child’s needs and future.

4. Ask what options are available for your child and family; think creatively and not just about what already exists.

5. Keep written records of all the meetings you attend and correspondence you send and receive about your child’s assessment and support.

6. If you feel that the assessment process has missed something, challenge it as this will affect the amount of funding that will be allocated.

7. Request a key worker if possible and training or information regarding the Early Support approach.

8. Get involved with parent support groups, parent forums and parent networks to influence your local services and the support being offered.

9. Communication passports are a great resource for support workers, PAs and new services get to know your child and support their additional needs. They outline each child’s needs, likes and dislikes in a way that supports their method of communicating.

10. Share and use the Include Me TOO ‘RESPECT’ principles.

11. Don’t forget to give yourselves time to settle in with working to your plan. Most of the time there will be a few teething problems before everyone is happy with what is happening.

12. Remember that the support plan is not set in stone. If it is approved and you find that what was planned is not working properly, do not be afraid to go back and ask to change it.

13. Some families will want to involve extended family members and elders when planning support and making important decisions with a disabled child or young person. Tell your social worker if this is what you want to do and make sure you are given enough time and support for this to happen.

14. Your child’s behaviour may be different at home, compared to school. Make sure that the professionals involved in assessing and planning support for your child know and understand this, and how your child’s support needs may differ from place to place.

15. If the information you are given about your child’s assessment is hard to understand, ask whether it is available in other formats such as easy -read, community languages, pictures, videos, symbols, audio, face-to-face, translated and British Sign Language.

16. Many families from diverse community backgrounds, cultures, faith and beliefs have said that they have found information and services are made more accessible when delivered and provided through grassroots community groups and organisations. Find out if there are any groups in your area who can help you.

17. Be specific about your child’s cultural needs.

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tInclude Me TOO, developed the following ‘RESPECT’ principles and code of practice with black and minority ethnic families to give to local authorities and service providers as guidance for best practice when working with disabled children, young people and their families.

The Include Me TOO ‘RESPECT’ Code of Practice for Representation, ParticipationandInvolvementofDisabledChildren,YoungPeople,Parents and Carers.

SEVEN PRINCIPLES

Responding toissuesandconcernsidentifiedbydisabledchildrenandyoung people and their familiesEncouraging partnership with relevant organisations and agenciesSupporting disabled children and young people and their families’ involvement in decision-making processes and the planning and developing of servicesProviding equal opportunities and choices for disabled children and young people and their familiesEnabling disabled children and young people and their families to participate in consultations and increase their representationChallenging barriers to inclusion and acceptanceTogether implementing the National “Include Me TOO” Charter of Rights for disabled children and young people

Service providers, planners and key decision makers need to:

Recognise the legal and moral rights and entitlements of disabled children and young people and their families Encourage and draw on all the different skills, views and experiences of disabled children, young people and their families Support their representation and participation in discussions about local priorities to improve service quality and responsiveness Promote partnership working based on strong relationships, transparency and openness Enable parents and carers to challenge the obstacles placed between their children and young people and high quality and responsive care Consult with a broad range of disabled children, young people and their families Transfer power to disabled children, young people and their parents/ carers to ensure better outcomes for disabled children and young people and their families

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Section 7 – Frequently Asked Questions

The following questions were put forward by parent and carer groups across England. Answers are correct at the time of writing.

Question 1:What is the difference between direct payments and personal budgets and personal independence payments?

A personal budget is an amount of money calculated as being enough to meet a child’s assessed needs. You could have a personal budget and tell the local authority what services or support you want from them or you could choose a provider to provide your individual services and take responsibility for your personal budget.

A direct payment is a way of taking the personal budget as cash to arrange the support yourself.

A Personal Independence Payment is a new benefit which will replace Disability Living Allowance from 2013.

Question 2:How do I access personal budgets?

To access a personal budget your child has to be assessed as having a health, education or social care need via your local authority.

If the assessment says your child is eligible for support, then he should be eligible for a personal budget which is calculated to meet the identified needs. Question 3:What are the criteria for getting personal budgets?

The process varies in different local authorities.

Once you have assessed need, however, you are entitled to request a personal budget and to take it as a direct payment if you want to.

Question 4:How much money do you get?

This depends on your assessed needs. The amount of money should cover the cost of meeting whatever you are assessed as needing.

Question 5:Who decides how the personal budget money will be allocated?

This is usually agreed through your support plan. Some people have the budget paid monthly into their own account; others have the whole budget paid to a provider of care.

Question 6: What happens to any money that is not used; can it be carried over?

The policy will be different depending on where you live. Some local authorities will agree an amended support plan for any unused money; others have a ‘claw back’ policy. Check local policy on this with your support worker.

Question 7:How does money get clawed back?

Local authorities audit direct payment accounts every year. Unused money might be identified and some local authorities will take this back. This could be done by deduction from your next due payment or they could invoice you.

Question 8:Do I have the right to appeal? What if I can’t afford to pay money back?

Each local authority will have a different system, but speak urgently to your support worker. There will be local advice agencies to help as well; for example your local Citizen’s Advice Bureau. If you do need to pay the money back, you might be able to do it in small instalments rather than one lump sum.

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sQuestion 9:Are personal budgets means tested?

Personal budgets for children are not means tested.

Question 10:Does receiving a personal budget affect any otherallowancesandbenefits?

No – it is not classed as additional income.

Question 11:If my child has multiple or complex needs, what is the maximum support or personal budget payment/package they can receive?

There is no cap on how much someone might receive. It must be enough to meet your assessed support needs.

Question 12:What happens if my child requires 24 hour care?

If the assessment shows that 24 hour care is needed, the budget should cover the assessed need.

Question 13:Will children who are assessed as having a lower level of need be overlooked for personal budgets?

They shouldn’t be! Anyone can ask for a personal budget. If you have an assessed need, no matter how small, you have the right in law to request a direct payment.

If your child does not meet the eligibility criteria, your local authority’s local offer should deliver some basic provision.

Question 14:When children get older, some parents may need more support as they themselves are getting older; will this be taken into consideration?

This should be taken into consideration as part of your review process and your assessment can be changed with changing circumstances.

Question 15:Do personal budgets support the additional costs of raising a disabled child, for example, heating, water bills, specialised equipment?

Different local authorities take various views on this. Equipment should be fine as long as it meets the outcomes of the support plan. Heating and bills are usually provided for through an enhancement on universal benefits.

Question 16:If you pay someone to administer the payroll, does the cost of this come out of the budget to meet your child’s needs?

The payroll costs should be identified separately in the support plan and specifically covered in the budget – without taking away direct support funding needed. Question 17:Do you need a separate bank account for payments to be paid into?

Usually yes. Your local authority will advise on their procedure for this.

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Question 18:Some people have trouble getting a bank account; how can this be made easier?

Work is taking place to resolve this issue. Some people have a shared bank account or a trust in place so that the money can be managed by someone other than themselves.

Speak to your support worker if you have difficulties regarding this.

Question 19:Canyouuseapostofficeaccount?

Yes – some local authorities would only allow this if it is separate from other household accounts and only used for the personal budget/direct payment

Question 20:Is there going to be accessible information and training available to black and minority ethnic parents about personal budgets and the process for assessments?

The process for people from black and minority ethnic groups is exactly the same. Some local authorities are better than others at communicating with diverse communities.

If your local authority does not have accessible information, ask them for assistance.

Question 21:How will assistance from family members be taken into account when assessing for personal budgets?

Natural support from family members is taken into account as generally we all have some natural support that we rely on.

This is part of acknowledging the ‘real wealth’ of families that extends beyond financial support and will form part of the assessment and support planning process.

Question 22:What support will be available to black and minority ethnic disabled children, young people and their families to make sure they are supported to fully take part in the assessment process of personal budgets and actively be involved in the decisions and planning?

Your local authority should be able to ensure that all families get the right level of support so that they can fully take part in all aspects of the assessment and decision making process.

If you feel you are not getting enough support, contact a local support organisation such as a Citizen’s Advice Bureau, Centre for Independent Living or advocacy service.

Question 23:What support will be available for disabled children, young people and their families to manage personal budgets?

Support is generally available through the local authority disabled children’s team or through a user-led organisation. Ask your local authority what support services are available locally.

Family Information Services and social services should be able to help you.

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sQuestion 24:Can you employ a family member to provide personal assistance under the personal budgets?

This is not common practice, but it has been permitted by some local authorities. You need to check with your local authority on their guidelines for the employment of relatives. If you can prove a genuine need, then they may allow it.

Question 25:Will PAs receive training to understand and support the traditions and customs of black and minority ethnic service users and their families?

One of the benefits of personal budgets is that you can personalise your training and directly employ people who you choose. Many people have found they have been able to develop their own training on what is directly important to them and employ their own staff who are able to understand and support their traditions or cultures.

Question 26:Will there be culturally appropriate and holistic local services available to families?

All children and families should be able to access local services which should operate in a welcoming and inclusive way. People have also built their own culturally appropriate personal support from their personal budget.

Question 27:At the moment after a certain age, disabled young people are expected to pay their college fees – will personal budgets be able to contribute towards this cost and support them to develop everyday skills and independence?

This is generally a local decision – we would hope yes. There is the flexibility to do this but each local area has their own rules on restrictions about what you can and cannot spend your budget on. You need to speak to your support worker to find out what your local authority policy is on this.

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Section 8 – The law and personal budgets

This chapter identifies some key areas of the law around personal budgets and direct payments for families of disabled children and young people.

It also outlines the steps you can take if you are not happy with a decision about a personal budget and highlights some future changes being planned by the Government.

‘The guidance’ refers to the Department of Health’s Guidance on direct payments: for community care, services for carers and children’s services which explains the law on personal budgets and the processes for getting direct payments.5

Quotes are taken from the same document unless otherwise stated.

The law relating to direct payments

In most cases, local authorities have a legal duty to make direct payments to everyone who is eligible for social care services and who wants to receive them as direct payments.

The idea of managing a personal budget may seem daunting, but local authorities “are encouraged to consider ways in which they can offer support around personal budgets and direct payments.”

They can do this themselves or through a partner organisation.

The guidance recognises that people find it easier to get advice from someone independent.

Your local authority should be able to refer you to a user-led organisation such as a local Centre for Independent Living, or another partner organisation for help with setting up and managing your direct payments.

Support planning

Local authorities should work with you to develop your child’s support plan. The plan should be “outcome-focused and person-centred, exploring what is important to the individual concerned and how they can spend their direct payments to organise and create support in order to achieve their aims.”

This means that your child’s support plan shouldn’t simply be written for you by a local authority worker and presented to you for agreement. The minimum is that they should work with you, but many families like to write their child’s plan themselves, perhaps with help from other families, or with support from an independent organisation.

The guidance says that plans should focus on “what people will be able to achieve with the right help, rather than simply putting arrangements in place to stop things from getting any worse.” And local authorities “should be prepared to be open to new ideas and be as flexible as possible. By exploring innovative and creative options, people should be encouraged to identify how they might most effectively achieve outcomes in a way that aligns with their personal wishes and preferences.”

This is really important because it is makes it clear that personal budgets are not just about keeping your child safe and healthy but also about aspiring to do the things that all children do, being included in their community and experiencing things that stretch and encourage their development and support their emotional wellbeing. The guidance says that local authorities should encourage families to use direct payments to enable their children to have the same opportunities and do the same activities as their non-disabled peers.

The plan should be clear about what will be done to achieve the agreed outcomes but should not be so detailed that it limits your choices and your control over the support options for your child.

5 www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_104840

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Calculating the amount of a direct payment

The guidance says that a direct payment should be enough to buy reasonable support that meets your child’s needs. Local authorities decide what is reasonable and how much to pay.

There is no upper or lower limit on the amount allocated to a personal budget, so a local authority should not make a blanket decision to restrict how much they will pay to children and young people in their area.

When calculating how much should be in a personal budget, local authorities should include the essential costs that are associated with the support or service you are planning to use.

So, if you are employing a PA, the personal budget should cover recruitment and Criminal Records Bureau check costs, national insurance, statutory holiday pay, sick pay, maternity pay, employers’ liability insurance, public liability insurance and payroll administration.

Some local authorities pay a one-off sum when direct payments first start to cover recruitment costs. However, local authorities do not have to pay for these costs if they consider them to be unreasonably high and if these services could be obtained more cost-effectively another way.

You can use your own money to buy extra support; if you do this, it would be a good idea to keep a record of what you spend, as it could be useful when your child’s needs and budget allocation are being reviewed in future.

Your local authority should give you as much notice as possible of how much your child will get as a personal budget, both before direct payments begin and if the amount changes after a review.

This is to give enough time to sort out any disagreement about the amount. If this is not possible, you can choose to either manage on the amount that’s been offered or refuse the offer.

If you refuse the offer, the local authority is still responsible for providing the care and support your child has been assessed as needing.

Making payments

Local authorities can decide how often to make payments but must bear in mind the impact of different options on families. Payments should be reliable so that families can pay for services when payment is due.

Employing personal assistants

Employing a PA will often be a family’s first experience of being an employer.

Local authorities should make sure families know their legal responsibilities as an employer so they may ask you if you are going to recruit independently, take on someone who is self-employed or use a provider.

The guidance says that local authorities should promote Criminal Record Bureau checks to help you keep your child safe by employing suitable people. They will be able to tell you how to go about this.

If you want to employ someone whose Criminal Record Bureau check indicates that they are not suitable to work with children, the local authority should not agree to give you direct payments. They should also explain to families that a Criminal Record Bureau check revealing no criminal convictions does not necessarily mean that someone is a suitable person to work with children.

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tsMonitoring and reviews

Local authorities should review personal budgets in partnership with you. They should accept that you may not get everything right first time and that you may want to change your mind and do things differently to the original plan. If there are problems, they should think about the reasons for the problems and work with you to sort things out; this may require the local authority to give you some extra help to manage the personal budget.

The guidance says that local authorities should avoid overly intensive monitoring procedures. You should be asked for straight-forward information and can be asked for information about how you are spending your child’s direct payments at any time.

The purpose of a review is to make sure that your child’s assessed needs are being met and that you are managing your child’s direct payments satisfactorily.

Local authorities should focus on the outcomes in the support plan; they may discuss ways of meeting your child’s needs but “should be prepared to consider variations” to what they propose. They will need to check whether your child’s needs have changed, as this could require a change in the level or type of support.

Local authorities decide how often to hold review meetings, depending on individual circumstances. Once they are satisfied that you are managing your direct payments properly, reviews should take place at the same frequency as reviews for people who don’t use direct payments but use services provided by the local authority.

The timing of the first review should be agreed from the start. The Framework for the Assessment of Children in Need and their Families recommends reviews at least every six months.6

Financial monitoring

Local authorities must audit individual direct payments because they have to make sure that public money is being spent to produce the agreed outcomes in your child’s plan.

They should make audit arrangements as straightforward as possible. You will be asked to set up a bank account to be used only for your child’s direct payments.

The financial auditing of direct payments is usually done by finance staff but local authorities must make sure that the person carrying out your review knows the findings of the audit.

Repaying direct payments

Local authorities should explain the circumstances when they might ask you to repay direct payments before you start to receive them.

They can require you to pay back some or all of the money if it has not been used to buy the services agreed in the support plan.

This happens if families:

• Spend the money on something that has not been agreed in the support plan.• Don’t spend the money at all, taking into account that money may be held for payments that are made in arrears, like PA wages.• Buy services from someone who is not eligible to provide them.• Don’t meet a condition that the local authority has imposed on them.

The guidance says that local authorities shouldn’t penalise honest mistakes or make families pay money back if they have the victims of fraud and they may take account of any hardship when deciding whether to ask for repayments.

6 Department of Health: Framework for the Assessment of Children in Need and their Familieswww.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4008144

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You can decide at any time that you do not want to receive direct payments any more.

The local authority should then look at alternative ways of supporting your child, including a notional or virtual personal budget which is managed by the local authority or a provider but controlled by you.

Local authorities can stop making direct payments if:

• They believe someone is no longer able to manage them.• They are not satisfied that a child’s needs can be met through using direct payments, including the need for welfare and safeguarding.• A child no longer requires the support.• Families are not spending the money to achieve the outcomes agreed in the support plan.• They believe the family is not acting in the child’s best interests.• There are certain legal proceedings relating to mental health or drug and/or alcohol dependency.

What to do if you are not happy with a decision about a personal budget

If you find yourself disagreeing with your local authority about something to do with your child’s personal budget, it might be useful to ask them what the legal basis for their actions or decisions is.

For example, if a social worker tells you that you can’t spend money from your child’s personal budget on a particular type of support or item, ask them to provide you with the legislation or guidance that upholds their decision.

It may be a local policy decision rather than the law, in which case you need to check that their policy is lawful.

Local authorities are legally obliged to have a complaints procedure.

If you are not happy with your situation and want to take things further, the normal complaints procedure is a good place to start. If you have to take legal action later, there will be an expectation that you have tried this route first. Make sure you keep good records (such as emails, phone calls, letters etc).

Getting the Best from Complaints – Social Care Complaints and Representations for Children, Young People and Others gives detailed guidance for local authorities.7

Some of the key principles are summarised below:• The complaints procedure should be easy to use.• It should make sure that people are treated with respect so they are not afraid to make a complaint.• It should take people’s concerns seriously.• It should make sure that complaints are resolved quickly and satisfactorily at the local level.• It should ensure a fair process and adequate support for everyone involved in the complaint. Local authorities should monitor their performance around complaints, deliver what they promise and use what they learn from complaints to improve services for everyone.

Local authority policies and procedures must be based on the related legislation. However, the law is open to interpretation and families and disabled people sometimes feel they have to take legal action against their local authorities. Thankfully, these situations are few and far between, but these legal actions are helpful in building case law, which interprets and clarifies the law.

If you are thinking of or are in the process of taking legal action against your local authority, seek advice from a Citizen’s Advice Bureau or solicitor.

7 Getting the Best from Complaints – Social Care Complaints and Representations for Children, Young People and Others (Sept 2006) ref DFES–2055–2002 www.education.gov.uk/publications/standard/publicationDetail/Page1/DFES-2055-2006

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“The Government is planning some important changes for children who have Statements of Special Educational Needs. From 2014, Statements will be replaced by Education, Health and Care Plans that will come out of a Single Assessment process; these plans will only apply to children with multiple health and learning needs.

If your child meets these criteria, the three services (Education, Health and Social Services) will have to work jointly with you to assess and plan for your child. Your child will have a personal budget that covers all three areas, so you should be in control of the expert support your child gets with learning and therapy services, as well as social care.”

Support and aspiration: A new approach to special educational needs and disability Green Paper

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What will be happening in the future?

On 6th November 2012, Edward Timpson, the Minister responsible for SEN and Disability within the Department for Education announced the extension of the SEN and Disability Pathfinders for 18 months to run through to September 2014.This means there will be more time to test the best ways of giving families personal budgets.

The Minister made this statement while giving evidence to the Education Select Committee on the proposed SEN and disability reforms. The Minister stated that “the overwhelming view is that we are moving in the right direction, but we want to get this right and if that means listening for a little longer, then we will do that.”

His evidence to the Education Select Committee was on the draft provisions of the Children and Families Bill that relate to SEN and disability. The Council for Disabled Children alerted him to the fact that parents were concerned that the reforms would erode their current rights in relation to education support. As a result of this the Minister wrote to parents through the Coun-cil for Disabled Children in order to address these concerns, his letter stated ‘the protections that parents and young people have in the current system will be carried forward into the new system’ (22nd November 2012)

The Education Select Committee’s scrutiny of the SEN provisions made recommendations that:• the lack of statutory duties on health services is a significant weakness within the draft legislation and that strengthening these duties is critical to its success;

• that all disabled children and young people, not just those with SEN, should have access to an integrated education, health and care system;• that the draft legislation needs to be amended to ensure existing parents entitlements are not eroded;• that there should be a national framework to inform the development of each ‘local offer’ and stronger accountability measures for evaluating them.

On 25th October 2012, Jeremy Hunt, Secretary of State for Health, confirmed his commitment to the Children and Young People’s Health Outcomes Strategy. Responding to a question about the special educational needs reforms, he stated that the Government must do more to integrate services for disabled children. He said ”I was formerly shadow minister for disabled people, I did a lot of work in the area of disabled children and I know the lack of integration of health, social care and benefits is an absolute nightmare for families for disabled children - we need to do a million times better than we are.”

With these strong commitments of support from senior Ministers, it is clear that disabled children, young people and their families are still high up the Government’s list of priorities.

The extension of the SEN and Disability Pathfinder programme until September 2014 means that there is still a lot of change to come, but it will be fully tested so that families of disabled children and young people can be sure that the system will work well for them.

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Section 9 – Glossary

Understandingthejargon

The following words or phrases are often used when talking about personal budgets:

Assessment – a process of meetings and discussions between professionals and organisations supporting the family, to fill out a form to work out what support and care a disabled child and the family need

Broker– a person or organisation that helps families to manage their personal budget and spend it in the right way. For instance, a broker could get a particular service for you, or could sort out paying a support worker.

Brokerage – is doing or negotiating something on behalf of anther person.

Care plan – after the assessment, this is the local authority document that explains all the steps that will be taken to meet the needs of the child and their family.

Commissioning – when an individual or organisation selects then buys a service on behalf of an individual or group. For example, a health authority pays a voluntary sector organisation to provide an advocacy service for disabled young people.

Communication passports – provide a practical and person-centred approach to passing on key information about an individual. They are a way of making sense of formal information and recording the other important things about an individual child such as their likes and dislikes.

Community Interest Company – type of company designed for social enterprises that want to use their profits and assets for the public good. They are intended to be easy to set up, with some special features to ensure they are working for the benefit of the community.

Direct payments – when a family with a disabled child is given a sum of money to choose and buy the services they need. It is illegal for a local authority to refuse direct payments unless there are very good reasons.

Early Support – this is about getting professionals and families together as early as possible to work out what support a child requires: www.ncb.org.uk/earlysupport

Eligibility – entitlement to support is based on an assessment of how much support a child needs. A child with low or moderate support needs may not be eligible for additional support. However, all children should be able to access the support and services available through their local offer.

Every Child Matters – a UK Government initiative for England and Wales launched in 2002. Its main aims are for every child, whatever their background or circumstances, to have the support they need to: be healthy, stay safe, enjoy and achieve, make a positive contribution, and achieve economic wellbeing. However, the coalition Government has moved away from the terminology, and the funding for, Every Child Matters.

Families Information Services (FIS) – are based in each local authority area and provide a range of information on all services available to parents, to help support children up to their 20th birthday, or 25th birthday if the child is disabled. They also hold up-to-date details of local childcare and early years provision in the area.

Individual budget – these were introduced by the Government to bring together a range of funding that disabled people may be entitled to such as: social care funding, Independent Living Fund, Supporting People, Access to Work, Disability Facilities Grant, and Independent Community Equipment Services. The sum of these separate funds is added together to create the total individual budget amount that could be spent by the individual.

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When a family wants to use their personal budget to buy support from a chosen provider, that provider can use the family’s budget on their behalf in a way that the family decides.This means that the child and their family have a clear idea of how much funding is available for them. The money is held by the provider on the family’s behalf but the family decides how to spend the money. The provider is still accountable to the family and has to promise to spend the money only on the family and the management and support needed to provide that service. This approach is based on person-centred planning (a process that puts the child at the centre of everything).

Lead professional – in most children’s services one person will be appointed as the main contact person for everyone involved in supporting a child and their family.

Local offer – it is the Government’s intention for local authorities to deliver a local offer to children and young people, from birth to 25, who are disabled or have special education needs. The aim of the local offer is to help parents and young people to understand what services are available in their area and how to access them.

Key worker – similar to Lead Professional. The main worker who supports the child and their family and who is the contact person for services supporting the child. Key workers are often from voluntary sector organisations.

Key working – is “a service involving two or more agencies that provides disabled children, young people and their families with a system whereby services from different agencies are co-ordinated. It encompasses individual tailoring of services based on assessment of need, interagency collaboration at strategic and practice levels and a named key worker for the child and family.” A key working role is often long term, complex and carries a wide range of functions. This includes emotional support and practical support for families, such as co-ordinating the services they access.

Mainstream and/or universal services – the services, activities and opportunities that the majority of people take for granted as part of everyday life. For children and families, this includes after-school clubs, holiday play schemes and swimming lessons in the local leisure centre.

Outcomes – For a family with a personal budget the outcomes are described in the support plan and are the things that will be achieved by the support activities. An example of an outcome is ‘to stay safe’. A good plan will show how the different ways a personal budget is being used will mean the child ‘stays safe’. For example, buying protective headgear for a child with cerebral palsy so that they can safely join in playground games.

Panel – this is the meeting where professionals will make a decision about the support being asked for in the child’s care plan. The decision will either be ‘yes’ or ‘no’, but the panel can ask for more information before making a decision. Families are sometimes invited to attend. The term ‘panel’ is used a lot in services; it is part of the budget management and decision making process.

Personal Assistant – someone who is employed by the family or young disabled person. It is not a care role in the traditional sense and can involve personal care as well as many other tasks.

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Person-centred planning – an approach to planning which puts the child or adult and those closest to them at the centre. The approach values the person and what they give to the world and explores their hopes, talents and support needs. The approach looks at how the person can live the life that suits them best. A good support plan will be person centred.

Personal budget (social care) – the total amount of money per year that children’s social services give a family to meet the child’s support needs. Families can manage the entire budget themselves or can ask someone to manage the budget on their behalf.

Pilot – a pilot is usually undertaken by a local authority with a selected number of families, and the pilot tests how the new process works. The pilot will look at what works and what doesn’t work. The local authority will then use this information to make changes to the way they administer the process in future.

Providers – any organisation offering support services to children, young people and their families.

Resource allocation system – a particular process that helps local authorities to make fair and transparent decisions about how much funding is given to meet children’s needs.

Review – A meeting between key profession-als, child and family to look at how their support has been going. For example, what outcomes in the support plan have been achieved? Do any changes need to be made to improve the plan and the support? Reviews can happen any time, most often after 3, 6 or 12 months. Your child’s support plan should say when the review will be.

Self-directed support – this is an approach to support. It’s about people taking control of their lives and telling providers how and when to provide their individual support.

Services – all the different organisations and individuals offering support, activities or facilities.

Seven Steps – part of self-directed support that has been developed by In Control, an organisation for disabled people. The seven steps are a simple explanation of what happens when during the personal budget process, from needing help to having a review.

Single assessment process – is going to replace SEN statements and separate health and social care assessments with a single, simpler birth to 25 years assessment process and education, health and care plan from 2014.

Support broker – a role taken on by someone who will support you to plan, find the support you need and, if needed, help you manage your support in the longer term. Support brokers may be funded by the children’s service or may be funded through you paying them from your child’s personal budget.

Support planning – a child/family centred approach of developing a support plan which makes good use of all the resources that the family and child can draw on. It will include information about how money will be managed and spent, who is responsible for achieving the plan’s outcomes and what happens if things are not working. The plan will include actions and support to make sure the child is safe.

Supported allocation questionnaire or self assessment questionnaire – questions used for everyone to assess a child’s need for support. Using the same questionnaire for everyone helps to make sure that individual children are given a fair share of funding based on their support needs. It is good practice for the family members and professionals to work together on the questionnaire.

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Team around the child – when a child has complicated support needs, this is the group of professionals who will work closely together to support the family.

User-ledorganisations – are local organisations, run and controlled by disabled people.

Voluntary and community sector – charities and other organisations that are not in the public (state funded) or private (for profit) sectors.

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Resources concerning personal budgets for children

Publications

The following publications can be ordered or downloaded from the links provided.

1.TheEssentialFamilyGuidetoBeingInControl. Cost: £10.00 A detailed book about personal budgets and self directed support written by family members for family members. www.in-control.org.uk/publications/books/the-essential-family-guide.aspx

2. Set of 45 Factsheets. Cost: FREEFactsheets covering different aspects of personal budgets and self directed support. www.in-control.org.uk/resources/fact-sheets.aspx

3. Easy Read Resources. Cost: FREEFactsheets covering different aspects of personal budgets in easy read. www.in-control.org.uk/resources/easy-read-resources.aspx

4.MakingYourSupportPlan.EasyRead.Cost: FREEA guide which explains support planning. www.in-control.org.uk/media/36867/making%20your%20support%20plan%20.pdf

5.MakingaBigDifference.Cost: FREEAn introduction to individual budgets and self directed support to disabled children and their families in Middlesborough. www.in-control.org.uk/media/72072/middlesborough%20report.pdf

6.EverythingYouNeedtoKnowaboutDirectPayments. Cost: £10.00A handbook about what you have to do to receive a direct payment and how to employ a PA. www.radar-shop.org.uk/Detail.aspx?id=70

7.TheRoughGuidetoManagingYourOwnPersonalAssistant. Cost: £8.00A humorous look at how to manage the relationship between employer and the PA. www.independentliving.org/docs6/vasey2000.html

8.Personalisation:Children,YoungPeopleandFamiliesBriefing1.Cost: FREEA paper sharing In Control’s learning from its work with over 30 children’s services over four years. www.in-control.org.uk/media/15332/children%20briefing%20paper%201.pdf

9.Personalisation:Children,YoungPeopleandFamiliesBriefing2. Cost: FREEA report that shares some of the key themes discussed during a round table event. www.in-control.org.uk/media/15317/childrens%20briefing%202.pdf

10.Personalisation:Children,YoungPeopleandFamiliesBriefing3. Cost: FREEA paper which focuses on In Control’s work with families in Newham with some additional information from work in Middlesborough. It highlights the positive impact across a range of outcomes for disabled children and includes discussion with professionals and families.www.in-control.org.uk/media/15266/childrens%20briefing%20paper%203.pdf

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11. A Strategy for Change. Cost: FREEA paper setting out a strategy for change for children’s services and their partners, including those in the voluntary sector.www.in-control.org.uk/media/74023/strategy%20for%20change%20report%20.pdf

12. The Personal Response. Cost: FREEA paper detailing discussions and topics covered at the ‘A Personal Response’ conference for children’s services November 2010.www.in-control.org.uk/media/80044/the%20personal%20response%20report%20.pdf

13. Council for Disabled Children Working Group on Personalisation. Cost: FREEA series of papers designed to create a culture change among service providers as they begin personalisation as the way forward and change services to fit in with this.www.ncb.org.uk/cdc/wider projects/personalisation.aspx

14. Direct Experience: A Guide for Councils on the Implementation of Direct Payments in Children’s Services. Cost: £15.00This guide is based on the experience of 13 councils who met with the Council for Disabled Children over an 18 month period. It details their experiences, concerns, developments and successes in providing direct payments to parents of disabled children and disabled young people 16 – 17.www.ncb.org.uk/cdc/resources/direct experience.aspx

15. Direct Payments for Children by Pippa Murray. Cost: £14.95An in-depth overview about direct payments for families.www.centreforwelfarereform.org.uk?library

16.IndividualBudgetsforFamilieswithdisabledChildrenScopingStudy.Cost: FREEAn SQW literature review for the department of education on how personal budgets have been implemented with families with disabled children.www.sqw.co.uk/file_download/143

17.IndividualBudgetsforFamilieswithDisabledChildren.Cost: FREEA research report from SQW commissioned before the coalition Government took office in May 2010 to evaluate the first two years of the individual budgets for disabled children pilot programme.www.sqw.co.uk/publications/RSG/AIIPublications/page1/DFE-RR145

18. Disabled Children Parents’ Guide: Social Care, Housing and Health. Cost: FREECerebra has produced an excellent guide covering the questions that parents and carers may ask.www.cerebra.org.uk/English/getinformation/disabilityrightslegalissues/Documents/Disabled%20Children%20Parents%E2%80%99%20Guide%20Social%20Care,%20Housing%20and.pdf

19. Making it Personal. How to commission for personalisation - guidance for commissioners and others in children’s services. Cost: FREEDocument produced by OPM to support this Parent’s Handbook. www.kids.org.uk/mip

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Websites

The following organisations and websites offer information and advice.

Some useful websites for further information about Personalisation

In Control www.in-control.org.uk OPM www.opm.co.uk Disability Rights UK www.disabilityrightsuk.org Think Local Act Personal www.thinklocalactpersonal.org.uk Social Care Online www.scie-socialcareonline.org.uk National Children’s Bureau www.ncb.org.uk SQW www.sqw.co.uk Paradigm UK www.paradigm-uk.org Centre for Welfare Reform www.centreforwelfarereform.org.uk Skills for Care www.skillsforcare.org.uk National Personalisation Network www.councilfordisabledchildren.org.uk/what-we-do/work- themes/social-care/personalisation

Organisations that support families with disabled children and young people

KIDS www.kids.org.uk Council for Disabled Children www.councilfordisabledchildren.org.uk Every Disabled Child Matters www.edcm.org.uk Contact a Family www.cafamily.org.uk Circles Network www.circlesnetwork.org.uk Daycare Trust www.daycaretrust.org.uk NAFIS www.daycaretrust.org.uk/nafis Include Me TOO www.includemetoo.org.ukMacIntyre - Family Footings www.familyfootings.org

Usefulgovernmentwebsites

Department for Education www.education.gov.uk Department of Health www.dh.gov.uk Office for Disability Issues http://odi.dwp.gov.uk/ Criminal Records Bureau www.homeoffice.gov.uk/agencies-public-bodies/crb/

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KIDS would like to thank the following organisations for their work to develop this handbook.

Daycare Trust is a national childcare charity, campaigning for quality, affordable, accessible childcare for all and raising the voices of children, parents and carers.

Daycare Trust advises parents and carers, providers, employers, trade unions and policymakers on childcare issues. Through their research, campaigning, projects, training and partnerships, they aim to help parents and families move beyond disadvantage to secure access to affordable childcare.

In Control is a national charity; its mission is to create a fairer society where everyone needing additional support has the right, responsibility and freedom to control that support.

As the pioneers of self-directed support and personalisation, In Control works alongside the government, local authorities, health and other organisations to drive the agenda forward. It also works directly with individuals and families to provide support, information and advice in relation to self-directed support and personalisation.

Over the past four years, In Control has undertaken significant work to introduce self-directed support for children, young people and families. This will be a key area of its work over the coming years.

NAFIS is managed by Daycare Trust and works to ensure that accessible, accurate information is available to all families by supporting local Families Information Services throughout England and Wales.

KIDS extends its thanks to the National Network of Parent Carer Forums Steering Groupforcommentingonthefinaldraftofthishandbook.

KIDS would also like to thank all those who contributed to the development of this handbook, including the groups of parents and carers who attended workshops across England to ensure that every aspect of personalisation was covered.

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Disability Rights UK was formed through a unification of the Disability Alliance, Radar and the National Centre for Independent Living on 1st January 2012.

It aims to be the largest national pan-disability organisation led by disabled people. Disability Rights UK’s vision is of a society where everyone with lived experience of disability or health conditions can participate equally as full citizens.

Include Me TOO champions rights, entitlements, and promotes social justice and equality for all disabled children and young people.

The aim is to increase involvement, participation and representation of black and minority ethnic (BME) disabled children and their families and other marginalised communities locally and nationally on decisions which impact on their lives.

This is achieved by developing and supporting cultural awareness and holistic and appropriate services/support through partnership working with disabled children and families and a range of other stakeholders.

OPM works to improve social results by helping organisations make a greater social impact and respond to change. It offers tailored support to clients across public and voluntary services to help them achieve their goals.

OPM members have wide experience in leadership and management development, organisational redesign and policy, evaluation, research, and public and stakeholder engagement.

The Making it Personal project was funded by the Department for Education

For more information, visit www.kids.org.uk/mip

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© KIDS 2013

49 Mecklenburgh SquareLondon WC1N 2NY

www.kids.org.uk/mip