Breathtakers

Supporting sufferers of Obliterative Bronchiolitis and other Rare Lung Disease

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School Support

It can be very worrying when on top of everything else your child is missing school on a regular basis or worse all the time, it is both educationally and socially damaging. However arrangements can be made to meet your child’s educational needs.

 

School can be a challenging time for children with Obliterative Bronchiolitis (OB). If your child is attending school but is regularly absent due to ill health it is best to try and arrange with the head/class teacher a method of support which allows work to be brought home. If you find this does not work it may be possible to arrange reduced hours for your child (i.e they only attend three days a week or have later start time). You may be able to home school them on the days attending school is not possible or you may be able to arrange for some individual tutoring in your home.

 

If the school is not co-operative DON'T despair. Simply got to your Local Education Authority (LEA) and talk to them about your child's educational needs. They may refer you to their Medical Referrals Team (MRP) who will liase with the school on your behalf to make suitable arrangements. They will ask for a letter from your Consultant outlining your child's condition. Most local authorities provide some home tutoring though often your child will have to be absent for a specific period of time (eg three consecutive weeks) before it becomes available. The time will vary with different education authorities so it is best to check with your local LEA. 

 

Latest Government News

 

   

Lamb Inquiry recommendations a step in right direction to improve Special Educational Needs (SEN) system

The publication of the Lamb Inquiry's final report is a positive step to making much needed changes to the SEN system in England and Wales.

Srabani Sen, Chief Executive of Contact a Family, said: "We welcome the Lamb Inquiry's recommendations particularly in relation to ensuring parents are better informed and are at the heart of the decision making process about their disabled child's educational needs.

"We would however urge government to put more pressure on local authorities to comply with their duties to provide special educational needs support to children in their area.

"We often hear of the enormous challenges that families with disabled children face in getting the right education to suit their child's needs.

"The system that is meant to be there to help and support a child in getting a good education, often appears to be working against them.

"We hear of families moving home and uprooting themselves to get their child into an appropriate school; of families fighting battles with the education system which sometimes last for several years; and of families taking the system to tribunal at a personal cost of tens of thousands of pounds."

The Lamb Inquiry is a government commissioned review of the SEN system, and its final report was published on 16 December 2009.

 

 

Special Educational Needs - Identification and Assessment

Early identification, assessment and provision for any child who may have Special Educational Needs (SEN) is crucial. The SEN Code of Practice, to which schools, early education settings, LEA's and others must by law have regard, promotes a common approach to identifying, assessing and providing for all children’s special educational needs.               

Where children do not make adequate progress, there is a need for the school to do something additional or different. There are several steps the school can take such as School Action and School Action Plus.
School Action could be further assessment, additional or different teaching materials or a different way of teaching and it might sometimes, but not always, be additional adult support. Teachers use Individual Education Plans (IEPs) to record the different or additional provision to be made for the child, teaching strategies, short-term targets for the pupil, success criteria, and what they have achieved.

School Action Plus is where School Action has not helped the child to make adequate progress, and the school asks for outside advice from the LEA’s support services, or from health or social work professionals. This could be advice from a speech and language therapist on a language programme or an Occupational Therapist’s suggestions or a medical diagnosis and report giving recommendations as to how to work differently with the child in class. It might be information about the child’s home circumstances that explains the changes in the child’s behaviour and attitudes to learning which can then help the school to work with others to resolve the situation.

Ask to speak your schools Special Educational Needs Co-ordinator (SENCO) or Learning  Support Co-ordinator if you think your child needs extra support and for additional information go to :
www.teachernet.gov.uk/management/atoz/s/senidentificationandassessment

 

A new podcast from Contact a Family has been produced to help explain the meaning of Special Educational Needs (SEN) and other related terms like SENCO (Special Educational Needs Co-ordinator). The podcast also has more information about what to do if you are concerned your child has SEN, what schools and the local authority can do to help, how to request a 'statutory assessment' and the 'statementing' process.


To listen to the podcast visit Web:
http://www.cafamily.org.uk/SEN_England.mp3 .

 

The National Parent Partnership
The National Parent Partnership Service offers impartial advice, information and support to parents/carers of children and young people with special educational needs. They are very helpful and can often save you hours of worry by simply knowing who you need to contact for what. They will also liase on your behalf with schools/LEA.

Parent partnership services are statutory services that offer information, advice and support for parents of children and young people with special educational needs (SEN) they will also be able to put parents in touch with other local organisations. PPS's also have a role in making sure that parent’s views are heard and understood and that these views inform local policy and practice.

Some parent partnerships are based in the voluntary sector although the majority remain based in their LEA or Children’s Trust. All parent partnerships, wherever they are based, are at ‘arm’s length’ from the LEA, that is, they are able to provide impartial advice and support to parents.

Simply log onto
www.parentpartnership.org.uk
to find your local contact.


Don’t be afraid to ask your school for their curriculum plans, some will be more willing to share them than others but be persistent your child is entitled to an education just like everyone else. You can view the National curriculum at www.qca.org.uk/qca_
 


Education Maintenance Allowance
16-18 year olds (and some 19yr olds) who stay on at school/college or who undertake certain types of unwaged training may be eligable for a weekly payment known as EMA. The amount depends on parental income and no payment is made if annual taxable income exceeds a set figure (£30,810 for academic year 06-07). EMAs do not affect any of the benefits your child receives. Contact your child's school, college or training provider for details.
 
 
Is bullying a problem for your child?
If your child has been bullied or is being bullied because of their disability and you would like to share your experiences to help other parents please get in touch. 

New guide to dealing with bullying: for parents of disabled children. 
Contact a Family has joined forces with Parentline Plus to produce a new guide about dealing with bullying, for parents of disabled children.
The guide is packed full of information and tips around spotting the signs of bullying, action and strategies you can take as a parent, and your child's rights. The guide was developed from a range of stories and experiences told to us by parents of disabled children affected by bullying. Their tips and stories are included throughout the guide.

If you would like a copy of the guide or to speak to someone about bullying, please call Contact a Family's freephone helpline on Tel: 0808 808 3555 or you can download it at Web:
http://www.cafamily.org.uk/bullying.pdf

 

Extra time for exams

Did you know that your child can have an extra 20mins during exams to help them perform at their best. You will need a letter from your Doctor but it may just be that extra bit of help they need especially for their Sats or GCSEs.

 

If your child coughs/clears their throat a lot and gets upset and stressed about disturbing others, which may effect their exam performance, you can also request that they sit their exams in a separate room. If you  have difficulties with your school ask your respiratory nurse or doctor to talk to them. It is important that your child gets an equal chance at education like everyone else. Small changes make big differences.

Home Schooling
If you decide to undertake some home schooling or simply want to support your child's learning there are lots of useful publications/work books to be found in any high street book retailers. Books suppliers, CGP Books, produce really good work and revision books which support KS1, 2 and 3.
You can order online at www.cgpbooks.co.uk
 
There are also lots of great interactive web sites that support curriculum needs such as the BBC school site.
Go to www.bbc.co.uk/schools  and search for their Revisewise, Skillswise and Bitesize pages.

 


SEN- Special Educational Needs

It may be possible for your child to have a SEN (a statement of educational needs). This will set out the child's special educational needs in terms of the child's learning difficulties and set out the SEN provision which the LEA thinks is necessary and name a school or type of school or other type of provision. You should discuss this with the Medical Referrals team.

 


Schooling in Hospital

Children who cannot attend school at all or are hospitalised will have tutoring provided via the hospital school and home tutors. Most hospital schools try hard to match your child's tutoring to their appropriate key stage level. Children can even sit exams in hospital if necessary. Great Ormond Street Hospital School for example will liase with your school to arrange continuity of work should your child be hospitalised for some time.

 


School attendance - reminder letters
A computerised system is being implemented nationally which will automatically send out reminder letters about school attendance. However, some children with life threatening and life limiting conditions may have
missed school either through illness.
Obviously it would be distressing if on top of everything a family is dealing with they receive one of these letters. If you are the parent of a child who has a life threatening or life limiting condition with personal experience of this system contact Lizzie Chambers of ACT so that they can get an idea of how many families this is affecting.
Please email Lizzie with details of your experiences on
mailto:lizzie@act.org.uk

 


Inclusion in Children's centres 

The Council for Disabled Children (CDC) has launched a new guide to support the inclusion of disabled children in children's centres and extended schools.
The guidance is designed as a helpful tool for children's centres, schools and other practitioners to ensure that disabled children have full and equal access to services and activities. It also includes useful case studies and a CD of resources.

To find out more, and download a copy, please go to Web:
http://www.ncb.org.uk/extendinginclusion




Teaching focus on disabled children
All trainee primary school teachers in England are to learn how to work with disabled children as part of a GBP500,000 project.
The money from the Training and Development Agency for Schools (TDA) will see training resources on special educational needs and disability given to providers of primary undergraduate initial teacher training (ITT) courses.
The TDA is also testing out similar resources for people on PGCE
courses and secondary undergraduate ITT courses. For further information
visit Web: http://www.cypnow.co.uk/news/ByDiscipline/Education/login/822519

 

 

If you have encountered any problems with

schooling or have some useful suggestions which may help others please email us at lynne@breathtakers.co.uk