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What should you expect from the school?

For all parents, schools must:

• Provide the name of the teacher responsible for children with special educational needs (called the SENCO).
• Explain the way it decides which children need help and how it will be given.
• Describe how it will work closely with parents.
• Through its governing bodies, draw up and publish a special needs policy and report annually to parents on its implementation
• Publish information about physical access to the school for children with mobility problems. Parents' tips for finding out about a new school
• Make an appointment to talk to the Head. Get an idea of the schools overall attitude towards children with special needs, and more specifically your child. Do you agree with the overall aims, values and practices in this school?
• Look at the schools 'special educational needs' policy. Ask to take a copy home to study in your own time.
• Meet the school's Special Educational Needs Co-ordinator (SENCO); this is a teacher with special training and responsibility for co-ordinating additional support to children. Find out how much time she has away from teaching to devote to children with special needs.
• Try to find out what resources the school has for children with additional needs (like ancillary help, learning support teachers and visiting specialists). The education authority gives schools extra money to support children with special needs. Ask the school what support they may be able to offer your child.
• It can be helpful to telephone the school governor who has responsibility for monitoring special needs issue. The school should give you the telephone number of this person. A parent said "I was ever so upset, it was such a change from what we had imagined for her. But once we got there and we'd gone round with the staff, they were just so thorough in finding out what would suit her…they were just tremendous and she's flourished."

Code of Practice

Since the Education Act of1994, the law says that a child has special educational needs if he or she has learning difficulties due to medical or health problems, physical disability, emotional and behavioural or other problems and therefore needs help. The help is known as special educational provision. The help could be wide-ranging, for example more individual time from a teacher or assistant, equipment or special arrangements to suit the individual child (for example time out of lessons for a trained adult to do the physiotherapy exercises in school), or time at a specialist unit. One in five children have some sort of learning difficulty at some time in their school careers, most children get over their difficulty while others need ongoing help.

The Code of Practice provides government guidelines that spell out who is responsible for what, if someone suspects a child needs extra help.

The guidelines give information about three different stages of help for your child, and there is considerable importance placed on partnership with parents. There are also clear procedures about what happens if you agree or disagree with the assessment and decisions about your child. Your child's progress should be reviewed regularly with you, and children who require considerable assistance 'school action plus' are given a forma statement of their child's special educational needs (SEN). This is referred to an SEN 'statement', which is issued by the local education authority. The full text of the Code of Practice is available at www.dfes.gov.uk/publications Ask for a copy of a parents guide to the new code on 0845 60 222 (UK only) to order your free copy of the new Code of Practice Guide for Parents). The website www.kidswitharthritis.org will have more details once they have been published.

Also try www.inclusive.co.uk/infosite/codepar.shtml

The input of a Physiotherapist and Occupational Therapist will be especially helpful in defining the difficulties your child has, and the strategies you and the teachers could use to help her. Specify that you would need them to assess your child whether or not your child requires an SEN statement.

These professionals in particular can assess your child's needs both in school and at home, and are key allies in coping with childhood arthritis.

Outcome of assessments

The assessments should clearly indicate the nature of your child's individual educational needs and the action and strategy the school will use to meet her needs. The assessments are completed following the Code of Practice, which is a statutory process. It should last eight weeks, and involve different specialists. It is still common for the process to take a lot longer but the more informed and prepared you are, the smoother and quicker the process is likely to be.

Parents' tips for requesting extra help in school

If you suspect your child needs extra help of any kind at school go and see the Head teacher and ask if she can be assessed. This is a formal process and one parent wrote this excellent introduction and advice:

Dear parent
At the end of the day, all of us want to get the best education for our children. We've just been through it - treat it like a challenge and you'll come out with a feeling of achievement. But don't expect it to happen over night - it does take time, energy and effort especially on the part of you, the parent. The more involved and informed you are in the whole process, the more confident you can be in your approach. Here are some tips:

• Have a positive attitude!
  Be firm
  Be fair
  Be clear
  Concise
  Polite
  and Grateful for other people's time, effort and support.
  
• Don't forget that you know your child best and you need to be actively involved with decisions made about her.
• Always take the person's name, date of call and short notes about what's said.
• Ask for confirmation in writing when you are told something over the phone.
• Ask other parents for advice and help.
• Get lots of advice - don't be afraid to ask, ask, ask.
• Involve yourself as much as you can with the professionals dealing with your child. Don't be afraid of them - they are normal people not to be avoided - but they may need to be reminded how urgent your child's schooling needs are.