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The Child Brain Injury Trust National Helpline Information Project (HIP) provides support for anyone affected by childhood acquired brain injury.

Our helpline can be contacted via telephone on: 0303 303 2248

Please note: calls to 03 numbers are charged at no more than national rate calls to standard UK landline phone numbers starting with 01 or 02, and they must be included in your phone providers inclusive minutes and discount schemes in the same way.

The helpline is staffed 9am to 5pm five days a week. The service is supported by an answer machine at all other times, so please leave a message and we will call you back as soon as we can.

For further information on our helpline service please download the pdf file:

Helpline Flyer

 

We have also put together some FAQs and Factsheets to help you find all the information you need.

Helpline Information Project (HIP)

What is it?

HIP is a project supported by the Department of Health that provides support, information and advice to children and young people affected by childhood acquired brain injury, their families and any professionals working with these families.

Why?
There are times when you just need someone to help lighten the load. Callers to our helpline often need someone to talk to, to provide them with information as well as where to go for further support.

What sort of issues can we help with?
Our trained staff will be able to give information on a wide variety of issues associated with childhood acquired brain injury including:

  • Services you are likely to need
  • What to expect
  • Who can help
  • Practical strategies

How do I contact the HIP Co-ordinator?
Call our helpline on 0303 303 2248  or e-mail helpline@cbituk.org

FAQ’s


We have put together some FAQ’s of the most popular enquiry topics and hope these will help you.

Acquired brain injury can often lead to changes in a child’s ability to control their emotions and behaviour. The child with a brain injury may seem very different in nature and temperament to how they were previously.

Low frustration tolerance is common. A child/young person may be more irritable and lose their temper easily over very minor things. Sensitivity to criticism is also common. Children/young people may have deficits in reasoning and thinking skills that lead to misunderstandings and they then become frustrated. Anger may be expressed as both physical and verbal aggression. They may throw tantrums more freely, cry easily and may yell and scream. At times they may lash out at other people or become destructive towards possessions or objects. They may be very difficult to calm and not know why they are angry. The children often acknowledge that their behaviour was inappropriate and feel remorseful but, because of their injuries and poor control, may still repeat the behaviour.

The irritability and anger may have a significant impact on their relationships with family and friends. It can also impact on their rehabilitation and educational progression.

It is important to understand the behavioural change is related to the brain injury and whilst there may be improvement over time there may be lasting changes in the child’s/young person’s control of their behaviour and emotions. The environment may need to be changed to suit some of the child’s/young person’s needs but there are also some strategies that may assist to modify problem behaviours.

Where possible:

Maintain routines and ensure plenty of rest. Fatigue exacerbates behavioural control problems

Listen to the child and adjust expectations. If a child is constantly pushed beyond their capabilities they will become frustrated

Be vigilant and redirect the child to alternate activities if they are becoming overwhelmed

Remove them from the situation if necessary (e.g. fighting with siblings)

Try to remove triggers to agitation (e.g. noise) and be aware of warning signs of frustration

Try not to become angry with them, arguing and yelling tends to escalate the situation. It is also unhelpful to say the same thing over and over even though you hope it will eventually “go in”. Your child is more likely to switch off.

Set firm limits regarding unacceptable behaviour (e.g. “that is not OK. We won’t be able to continue this if you yell at me”.)

Provide directed praise for appropriate behaviour (i.e. “I really like the way you try things”)

Programmes can be designed to try and assist with anger management but will depend on the age and level of understanding of their behaviour and emotions. Advice regarding different management strategies for parents, carers and schools is available through members of the Brain Injury Team (e.g. psychologists, consultant).

There may be times where the behavioural problems are extreme and having a significant impact on the child’s adaptation and progress. In these cases, medication may be an option and would be discussed with the child’s rehabilitation specialist.

Child Brain Injury Trust Factsheets available on our website entitled ‘Changes in Behaviour’ and ‘Thinking, Feeling and Behaviour’. If you are unable to print these off please call our Helpline and we will post them to you.

The Challenging Behaviour Foundation has a list of resources for challenging behaviour. Some parents may find these useful at www.challengingbehaviour.org.uk.

The ABI Outreach Service (ABIOS) provides information and strategies:
www.health.qld.gov.au

In Scotland, Caledonia Youth provide support for young people covering sexual health and wellbeing, personal relationships and emotional issues, by offering a range of services – information, advice and education, plus clinics and counselling. www.caledoniayouth.org.

Dis-inhibited behaviour is a common characteristic of ABI – for example, saying things which are tactless and socially inappropriate, being overly friendly and affectionate to strangers, making inappropriate sexual advances and not being able to think through the consequences of actions.

Inappropriate behaviour and dis-inhibition are caused by the lack of ability to control either actions or speech. The child will act on impulse and say or do the first thing that comes into their head and will express thoughts, feelings, and opinions without any insight into the effect these may have on others. The child does not seem to be able to judge carefully, weigh up options, or filter out inappropriate actions. This is due to neurological damage to areas of the frontal lobe.

These behaviours are not only frustrating but are also very embarrassing for the family. Impulsivity leads to excessive damaging behaviour which can be both tiring and irritating. Whilst the family is mortified, the child does not comprehend the significance of what they have said or done.

The services offered at Caledonia Youth in Scotland are specifically geared to young people up to the age of 25, with a focus on teenagers. They provide free and confidential support and advice through their clinics, education and counselling services that are all geared to help young people make more informed, responsible choices about personal and sexual relationships.

Suggested Management Strategies

Quietly redirect the child, using brief explanations, to suggest how to react more appropriately.

Provide praise and attention in response to appropriate behaviour and redirect the child’s attention to appropriate alternative activity.

Consider the use of role play to teach appropriate behaviour.

A behavioural management programme may be devised:
Ensuring a consistent approach to managing behaviour by both family and school.
Being aware of what triggers have lead to previous outbursts.
Establishing clear rules and ensuring the young person understands the rules, the consequences of breaking them, and also the rewards for complying with them.

Child Brain Injury Trust Factsheet on our website – ‘Behaviour: practical suggestions for home and school’.

Child Brain Injury Trust also offers training on our workshop ‘Don’t Judge a book by its cover’. Click here for further information.

If children with an ABI have difficulty with behavioural self-control they may resemble pupils in whom behavioural disability has been diagnosed. Children with ABI, however, may not respond to management programmes commonly used with other pupils because of issues which are specific to ABI.

These include the difficulties listed below.

Variability – There is a huge variability between pupils with an ABI which may be due to a number of factors including site and severity of their injury, the nature and duration of their rehabilitation, the schools they attend, and the support from their families and others. For these reasons, behavioural programmes for these children must be flexible and individualised.

Delayed consequences – Each injury may yield its consequences only when the child reaches the age at which the function in question is expected to mature. Delayed consequences are easiest to detect in young people who acquire a brain injury as a pre-school child. They may experience a relatively good recovery but behavioural difficulties can begin to emerge when they enter school. Often these problems are not recognised as relating to their ABI, but rather are attributed to laziness, oppositional nature, or emotional instability.

Behavioural and Psycho-social challenges – Behavioural problems after an ABI are more common than a physical disability and can be more devastating for the family. Lack of understanding and management can then result in an escalating cycle of negative behaviour.

Frontal Lobe Damage – There is a growing awareness that damage to the frontal lobe can cause significant difficulties to a child’s ability to self-regulate their behaviour.

Damage to the frontal lobe can result in the child’s ability to:
Identify what must be done in a novel situation
Plan how to accomplish the task
Inhibit inappropriate behaviour
Initiate goal directed behaviour
Monitor and evaluate performance
Find alternative approaches in the event of failure

A positive, antecedent-focused, communication based approach to problem behaviour is thought to be more effective after ABI.

Strategies associated with this approach include:

Preventing negative behaviour by eliminating the triggers including unreasonable demands
Promoting on-task behaviour by providing the pupil with the support needed in completing that task
Helping the pupil on several non-threatening tasks before presenting tasks that are difficult.
Teaching positive alternatives, including communication alternatives to negative behaviour
Encouraging positive behavioural self-control (e.g. by giving a pupil choices and control when possible)
Systematically desensitising pupils to events that cause anxiety
Flexibility in Educational Planning – This is particularly important with pupils with an ABI because there can be enormous changes in their functioning in the first weeks, months and years after their return to school.
Consult a specialist – Knowledge about ABI is not common, it is therefore worth consulting someone with specialist knowledge in this area.

Suggested management strategies
Take a record of various situations during the week that might trigger or provoke stress or anger. Look at ways of reducing the frequency of these by changing the structure of the child’s environment.

Maintain routines and establish a constant predictable environment.

Encourage parents/carers to make sure the child gets plenty of sleep. Fatigue exacerbates behavioural problems.

Adopt realistic expectations of what the young person is capable of. Listen to the pupils own opinions on what they feel they can comfortably achieve, and adjust expectation to avoid frustration and anger.

Monitor the young person carefully, re-directing them to alternative activities if they are becoming overwhelmed. Re-direct their attention to focus on the positive. Remove the child from the situation if necessary.

Try not to argue back or take criticism personally.

Provide specific praise for appropriate behaviour.

Provide anger management training tailored to the age and level of understanding of the child.

www.shipsproject.org.uk – Support for head injured pupils in school. Set of resources to help pupils, teachers and parents.

Sheffield City Council have also produced a set of leaflets for parents and teachers about supporting pupils with acquired brain injury which can be downloaded using the following link: www.sheffield.gov.uk

Local hospitals often have ‘sleep clinics’ – your GP will refer you. If you have a hospital appointment in the near future, ask your consultant.

‘Sleep Scotland’ – An organisation which supports families and professionals with children’s severe sleep problems.
Telephone: 0131 651 1392
e-mail: sleepscotland@btinternet.com
www.sleepscotland.org

‘Contact a Family’ – factsheet entitled “ Helping your child’s sleep” available by e-mailing their helpline: helpline@cafamily.org.uk

‘Cerebra’ have a sleep service available to support families who have sleep issues – they also have sleep counsellors to provide information and in some cases undertake sleep assessments: www.cerebra.org.uk

‘Scope’ have lots of useful information about sleep difficulties in children: www.scope.org.uk

‘Family Lives’ may also be able to provide further emotional and practical support for parents and carers covering issues including sleep difficulties and challenging behaviours: www.familylives.org.uk

‘The National Autistic Society’ has some very useful information on its website about sleep disorders with some helpful links and resources: www.autism.org.uk

Depression is quite common among parents, carers, siblings and children/young people with an acquired brain injury and it’s really important to seek help from your GP because it affects you, your family and your work and is a treatable illness.

This Australian website has some useful information and advice:
www.lifesupports.com.au

The self-assessment test on this website may also be helpful: www.nhs.uk

The website www.aboutbraininjury.org.uk is a great resource for teenagers to use.

The page on “Being a teenager with ABI” has information on the following topics:
Legal ages
Sexuality and ABI
Sexual health and STIs
Drugs
Alcohol
Partying and having fun
Rebelling
Tattoos and piercings
Body image

There are also pages on “Coping with life” that go into subjects involving emotions like stress, anxiety and depression.

‘Headway’www.headway.org.uk has a useful resource section on such issues as practical strategies for memory problems, managing anger etc. This website will be most useful for teenagers and young adults rather than young children.

Counselling or complementary therapy might be useful to deal with a number of issues your child is facing.

Northern Ireland Music Therapy Trust: www.nimtt.org

‘Contact’ (in Northern Ireland) can be approached to obtain counselling input or advice for young people: www.contactni.com. They also provide the regional ‘Lifeline’ crisis counselling service, a dedicated 24 hour helpline for people of all ages in crisis or needing to talk to a counsellor. They can be contacted on 0808 808 8000.

‘Mind’ www.mind.org.uk is an organisation that promotes better mental health. Has a useful A to Z section on issues such as managing anger, coping with depression, post traumatic stress disorder, stress and sleeping problems. Their ‘Infoline’ can be contacted on 0300 123 3393.

The Child Brain Injury Trust ‘Youth Zone’ also has a series of leaflets called “Hot Topics”.
These leaflets are written by young people for young people and currently cover 4 topics:

Staying Mates with your Mates
Memory at Home
Memory at School
Managing Fatigue

These can be downloaded from our Youth Zone: www.youthzone.childbraininjurytrust.org.uk

What does SPECIAL EDUCATIONAL NEEDS (SEN) mean?

A child or young person has special educational needs….

If they have a learning difficulty which calls for special educational provision to be made for them.

Children have a learning difficulty if they:
Have a significantly greater difficulty in learning than the majority of children of the same age;
Have a disability which prevents or hinders them from making use of educational facilities of a kind generally provided for children of the same age in schools within the area of the local authority;
Are under compulsory school age and fall within the definitions above or would do so if special educational provision was not made for them.”

(Sec. 312 Education Act 1996)

Special Educational Provision means:

“…educational provision which is additional to, or otherwise different from, the educational provision made generally for children of their age in schools maintained by the Local Authority…”

For more information

The following link will take you to the ‘Special Educational Needs and Disabilities Act 2001’ on the legislation.gov.uk website: www.legislation.gov.uk

In Scotland:

‘Enquire’ (The Scottish Advice Service for Additional Support for Learning)

Contact Enquire for information and advice on the education system and how it works; your legal rights and responsibilities; resolving disputes or concerns; local services to support you; and the meaning of educational jargon.
http://enquire.org.uk/
Helpline: 0845 123 2303
Email: info@enquire.org.uk

SEN SCHOOLS vs. MAINSTREAM vs. INDEPEDENT – Which is best?

Deciding which school your child attends can be a difficult decision and parents are often presented with many options.
This really is a decision to be made by parents or carers and is a very individual decision. It may be appropriate to get input from professionals already involved with the child or young person to give a clearer picture of their needs and this information can be taken to schools to see if they are able to support a child’s needs. Information from other professionals will also be included in a child’s ‘statement of special educational needs’, should they have one.

It is acceptable to speak to different schools to see what support they are offering but parents will need to bear in mind that if a school is outside their local authority area it may be difficult to get funding for a child or young person to attend.

Information about individual schools can be obtained from a number of sources. The school or college itself will often have a website that is available to view. They should also be able to provide you with copies of their disability policy. The local authority may also have some further information available about individual schools and colleges that you can look at.

The Ofsted website, www.ofsted.gov.uk, has copies of the latest inspection reports for schools (including special and independent schools) available to view.

Other organisations that can provide information on schools include:

NATSPEC (The Association of National Specialist Colleges; www.natspec.org.uk) who have a college finder and provide information about schools and colleges.

DfE (Department for Education) www.gov.uk/government/organisations/department-for-education‎. Also search for the following agencies on this website:

Teaching Agency
Education Funding Agency
Qualifications and Curriculum Development Agency

What if the school I would like my child to go to, is different to the one the local authority suggests?

It may be that a parent/carer has chosen a school and the local authority do not agree with this decision. The local authority does have a duty to take into account parents/carers choices with regard to schooling for their child.

Parents/carers also have the right to appeal a decision by the local authority if they feel it is not appropriate for their child. There are a number of organisations that can assist with this including the local Parent Partnership Service (PPS).

The PPS is often based within the local authority however they are an independent service for parents/carers who can offer information on getting further support for children/young people in school, statutory and local authority regulations and procedures regarding assessments for statements on special educational needs. Find your local PPS by following this link: www.parentpartnership.org.uk

Other useful websites include:

www.gov.uk
www.schoolappeals.org.uk
www.schoolappeals.com

Is home schooling an option?

Some parents decide to educate their children at home for a variety of reasons including not being able to find the right support for their children in school. Home schooling can certainly be an option for parents/carers and there are a variety of websites and resources available to provide support.

The Education Welfare Team at the local authority can provide more guidance on how to go about home education in your area, however, in brief:

If a child does not have a statement of special educational needs and parents would like to electively home educate them they will need to notify their current school. A child can then be withdrawn from school and school will then notify the local education welfare team who will contact the parent/carers. A programme of work will then have to be agreed between parents/carers and the education welfare officer.

If a child has a statement of special educational needs and parents would like to electively home educate them they will still need to notify their current school who will notify the local education welfare team. However parents/carers will not be able to withdraw a child until a programme of work has been agreed between parents/carers and the education welfare officer in charge of special education needs.

The GOV.UK website has some very useful information regarding home schooling and this can be accessed using the following link: www.gov.uk

The GOV.UK website gives information regarding what parents/carers requirements are, monitoring and getting started. It is possible to get further help regarding home schooling from the local authority website.

The following websites offer more information and resources:

www.primaryhomeeducation.co.uk
www.home-schooling-uk.com
homeschooling.gomilpitas.com/regional/UK.htm
www.ahomeeducation.co.uk
www.home-ed.info
www.guardian.co.uk
www.parentsintouch.co.uk
www.education-otherwise.net
www.he-special.org.uk

In School Transitions

It is important to remember that, following acquired brain injury, a child’s needs will change over time. Getting the right support in place early can be useful in ensuring that in school transition (such as moving into a new year group or the build up to exams) goes smoothly.

Child Brain Injury Trust runs training workshops for staff in education and encourages a whole school approach to ensure teachers have knowledge of what kind of issues they may need to look for. Details of the training can be found here.

Child Brain Injury Trust has Child and Family Support Co-ordinators in some area of the UK and in these areas they can assist parents/carers on school visits and help communicate with staff in education.

There are also a number of other organisations that can support parents/carers if you feel you need more support in school.

Child Brain Injury Trust has a list of these on a Factsheet called ‘Getting more help at school’.

The Parent Partnership Service (PPS) can offer support to parents/carers when speaking to school and/or staff. The PPS may also be able to provide an advocate for parents/carers on education matters.

Schools and local authorities have a duty of care to all their pupils and to take into account the Every Child Matters legislation to help all children and young people meet the 5 Every Child Matters Objectives.

The local authority and GOV.UK websites have further information about schools’ statutory obligations.

Another useful website to look at is the Department for Education (www.education.gov.uk) which is aimed at education staff and school governors and lays down the statutory guidance for schools.

Child Brain Injury Trust’s Legal and Services Directory lists solicitors and legal firms across the UK who have knowledge of childhood acquired brain injury and other issues, including education law. It also has a useful chapter entitled ‘Brain Injury and Special Educational Needs’ which outlines the process for obtaining a Statement of SEN for your child (also see next section below).

It may be appropriate for parents/carers to first of all check with these companies (most of whom will offer a free first consultation) to ascertain their legal rights before they look to take any legal action on an education issue.

As mentioned previously, information about the Special Educational Needs and Disability Act can be found at the following website: www.legislation.gov.uk and information about The Equality Act can be found at the following websites:
www.gov.uk
www.legislation.gov.uk

Details of the Disability Discrimination Act 2005 can be found at www.legislation.gov.uk.

In Scotland

Refer to The Education (Additional Support for Learning) (Scotland) Act 2004 at www.legislation.gov.uk

The Govan Law Centre provides a brief informative guide to school’s Disability Equality Duty at www.edlaw.org.uk

In order to obtain a ‘statement of special educational needs’ for extra support within the classroom, a child/young person will have to undergo an assessment.

Assessments are usually initiated by the school and involve input from the school and the parents/carers as well as other sources which can include the local authority, an educational psychologist and other medical professionals involved with the child/young person. If the assessment is not initiated by the child’s school then one can be requested from the local authority by parents/carers.

It is important to remember that getting an assessment doesn’t automatically mean that a child or young person will get a statement. A statement can be difficult to obtain due to local authority regulations (for example in Oxfordshire a child has to be between 4 and 5 years behind his peers in learning) or if a child/young person does not appear to have a high enough need. If a child/young person is not granted a statement they may be put on ‘School Action’ or ‘School Action Plus’ to get additional support within the classroom. The local Parent Partnership Service can assist with requesting and appealing statements.

If a child/young person is eligible for a Statement of Special Education Needs it is important to remember that this is a legal document. Once the final statement has come through it can be appealed if changes need to be made, however it will often not be changed until it is reviewed, so it is important that parents/carers check the initial proposed statement to ensure they are happy with it.

Once the statement has been finalised then the identified provisions to support a child or young person have to be provided by the school/local authority named within the statement.

In Scotland

“The Parents guide to additional support for learning” explains the assessment process, learning plans and parents rights in relation to your child’s education.

This booklet is available free from Enquire – Tel: 0845 123 2303 or can be downloaded from their website at www.enquire.org.uk
Depending on your child’s needs, different levels of planning will be required to make sure their learning needs are met and to arrange the support they need.