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The aim of this part of the website is to give you some pointers to the kind of help you may be able to get. The information has been supplied to Enable Together by Contact a Family, Enable’s charity of the year 2006.
You can find out more about your rights and entitlements on the Contact a Family website www.cafamily.org.uk
The main benefit for disabled children is Disability Living Allowance (DLA). This is made up of two parts:
Your child may qualify for either or both of these components. If your child gets the care component at the middle or higher rate you may also be entitled to Carer's Allowance (CA) for looking after your child. You can get more advice about Carers Allowance from Contact a Family.
There is a form for claiming DLA for children called DLA1 Child. When claiming benefit for your child it is very important that you include as much information as you can on the form. Any information provided by your doctor may help your claim. If you are unsure about how to fill in the form, ask a Citizens Advice Bureau or the Contact a Family Helpline for advice.
Child Tax Credit is for families with at least one child. It is made up of a basic family element (paid at a higher rate if you have at least one child under 1 years of age), amounts for each child, and extra amounts for children who get DLA.
Working Tax Credit (WTC) may be paid if you have a child (under 16, or under 19 and still in full-time education) and you (or your partner if you have one) are working at least 16 hours a week. WTC is also available for some low paid people without children: people with a disability working at least 16 hours a week, people over 50 who have recently returned to work after a period of time on benefits and people over 25 working at least 30 hours a week.
For more information about tax credits, see Contact a Family’s The Tax Credits Guide which includes a ready reckoner so that you can see how much you might get or call the Contact a Family Helpline.
You may be able to get additional benefits if you are on a low income such as Income Support, Housing Benefit (Rent Rebate in Northern Ireland) and Council Tax Benefit (Rate Rebate in Northern Ireland)
There are a whole variety of other concessions that families may be able to get such as Council Tax disability reduction if, for example, you need extra space in your house because of your child's disability, free Road Tax and a Blue Badge for the car. These are not means tested. If you call Contact a Family, they will check whether you are getting all that you should be.
Social Services Departments/Social Work Departments in England, Wales and Scotland have a duty in law to assess the needs of a child with a disability. The aim of the law is to support you as a parent and to help you care for your child. Although the law is different in Northern Ireland, effectively children with disabilities in Northern Ireland have the same rights as those in the rest of the UK.
As a parent carer, you also have the right to ask for an assessment for yourself.
Assessments are the first stage in sorting out what help you need from Social Services. A social worker will carry out this assessment and organise any care and support that is agreed. The social worker will probably visit you at home to talk about what support and services you think you need. Try to prepare for the visit. Focus on things which would help you and your child. It may be a good idea to make notes and write down any questions you have.
During the assessment the social workers must involve you, your child and anyone else who helps care for them. This is because social services have to take into account the particular needs of your child in relation to their health, development, disability, education, religion, racial origin, cultural and linguistic background, and the degree to which these needs are being met at the moment.
Social Services can give payments, instead of services, to allow disabled people and carers to buy in the services they have been assessed as needing. Direct Payments are seen to promote the independence of parents and their disabled children who would like to manage their own social care needs.
If your child is under 16 Direct Payments will usually be made to you as their parent. When a child becomes 16 she or he can receive payments in their own right to allow them to buy in the services they have been assessed as needing.
The amount you receive should be enough to allow you to meet all the costs involved; including tax and National Insurance as well as the fee for a police check (should you employ help directly). Social Services will usually deduct an amount from the payments equivalent to what you would have been charged had they arranged the services. Alternatively, Social Services may make the payments in full and ask you to reimburse them any assessed charge.
Any payments you receive must be used to pay for services to meet the assessed needs.
The Department of Health together with the Council for Disabled Children have produced 'A Parent's Guide to Direct Payments'. Copies are available from Department for Education and Skills Publications, PO Box 5050, Annesley, Nottingham NG15 0DL. Tel: 0845 602 2260, Fax: 0845 603 3360 e-mail: dfes@prolog.uk.com
Childcare plays an important part in family life. You may need it so that you can work, study or do something for yourself. Families with disabled children often find that the accessibility and availability of childcare is limited. Some families use informal childcare, such as other family members, friends or neighbours. At times you may find that you need to make more formal arrangements and may need to use more than one childcare service. Some local areas have specific services for families of disabled children. Others may have projects that support children with additional needs in accessing mainstream childcare services
Choosing the right childcare service is important for you and your child. You need to be confident that your child is safe, secure and happy. More detailed information on childcare options and availability can be accessed from your local Childcare Information Service. If you live in Wales, England or Scotland, The Childcare Link freephone service will put you in touch with your local information service on Tel: 08000 96 02 96 Web: http://www.childcarelink.gov.uk If you live in Northern Ireland contact your local Health and Social Services Community Trust for more information.
As a parent of a child with special educational needs, education may be one of your key concerns. Parents naturally have worries and anxieties about schooling, including whether special schools or mainstream education are the best options.
Education in England and Wales
The Special Educational Needs and Disability Act 2001 sets out changes to education for children with SEN in England and Wales. It also brings education within the remit of the Disability Discrimination Act making it unlawful for education providers to discriminate against disabled pupils, students and adult learners.
If your child has special educational needs, there is a graduated response in meeting these. At Early Years Action or School Action additional or different support to that given as part of the usual curriculum is provided. Early Years Action Plus or School Action Plus involves a request for help from outside services or specialist help to meet your child’s needs. An IEP (Individual Education Plan) will record the action taken at these levels.
If your child’s needs cannot be met by these levels of support, the school and/or you can request a statutory assessment of your child’s needs. This is a multi-professional examination to determine your child’s special educational needs. As a result of the statutory assessment, the LEA (Local Education Authority) may decide to issue a Statement of Special Education Needs which details your child’s needs and the type and amount of support your child requires. The process from requesting an assessment to issuing a Final Statement should take no longer than 26 weeks.
Education in Northern Ireland
The Special Educational Needs and Disability (Northern Ireland) Order 2005 increased the rights of children with SEN to attend mainstream schools and introduced disability discrimination laws for the whole education system in Northern Ireland.
There are three levels of support for children with special educational needs. Stage 1 involves talking to your child’s teacher about your concerns. At Stage 2, the school will draw up an education plan which sets targets to be achieved and timescales for this. At Stage 3, the school will seek outside specialist help and create a new education plan to reflect this.
If your child’s needs cannot be met by these different stages, the school and/or you can request a statutory assessment from the Library and Education Board (Board). As a result of the assessment, the Board may decide to issue a statement of special educational needs. This sets out your child’s needs and the additional support required. It should take no longer than 18 weeks from requesting a statutory assessment to receiving a proposed statement.
Education in Scotland
The educational system in Scotland changed in November 2005 with the Education (Additional Support for Learning) (Scotland) Act 2005. The new law introduces the wider concept of Additional Support Needs and extends the right of extra help to more pupils. This means that even if your child is not considered to have special educational needs, they can get additional support. Children may have additional support needs for various reasons including social or emotional difficulties, a physical disability, learning difficulties, having English as an additional language and being gifted.
If your child has additional support needs, the school can request an assessment from appropriate agencies. You can also request an assessment, provided the education authority has decided to formally identify whether your child has additional support needs. There are different levels and types of assessment depending on your child’s additional needs. The assessment can result in personal learning planning which sets out aims and goals for your child to achieve or individualised education programmes which describe the nature of your child’s support needs and the type of support they require.
Children with enduring, multiple or complex needs may need a co-ordinated support plan. A co-ordinated support plan is a legal document which identifies your child’s additional support needs and the support they require. This aims to bring together the different professionals involved in your child’s care and ensure that the support is properly co-ordinated.
Many parents find it helpful to make contact with other families who are in a similar situation and understand what the family is experiencing. There are four main ways that you can make contact with other families:
In the Contact a Family Directory you will find details of UK support groups for specific medical conditions.
There are also many local parents groups in the UK which offer a chance to meet other families in the local area. Because there are many hundreds of these, to find out if there is one near you, contact our helpline, or a Contact a Family office in your area if there is one.
Contact a Family has a new web based linking service www.makingcontact.org, whereby you can register free to be contacted by other families across the world affected by a particular condition by e-mail. Please note that although searching and registration is free, there is a £5 a year charge for contacting others through MakingContact.org. This covers administration costs and also ensures that children do not use the site, as discussions are unmonitored.
UK families who do not have access to the Internet, or who would find it difficult to pay the charge for the web based linking service may register via our manual linking service. Either download a brochure and application form or phone Contact a Family Helpline for one. They will then look for a match from others who are looking to make contact either via the Internet service or by telephone. Please note that this service will be slower than the similar web based linking service.
For all enquiries, Contact a Family is pleased to advise you further. Call freephone 0808 808 3555, (Mon-Fri, 10am-4pm, Mondays 5.30-7.30pm) or email helpline@cafamily.org.uk
