March 2013 Education for children with MS in Scotland – a ...

Factsheet

Education for childrenwith MS in Scotland – afactsheet for parents,teachers and localauthorities

Education (Scotland) © MS Society 2013

March 2013

Attending school or college can, at times, be difficult forpupils with a long-term condition such as MS. Thisfactsheet is intended as a guide to the services andsupport that are available to pupils, teachers, parents,schools and colleges.

Contents

Introduction

2 MS and education2 How can the local authority help?3 How can schools help?3 How can teachers help?4 How can parents help?5 What are a pupil's rights in the educationsystem?10 Managing absence from school11 Taking medication at school12 Equality Act 201213 Useful organisations

You might also want to read Childhood MS - a guidefor parents, for more information about how MSmight affect children and teenagers.

i Where you see this symbol more information isavailable from other sources


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The local education authority can help by:

MS and education MS can affect pupils in different ways, but it might meanpatchy school attendance and difficulty completing workbecause of:

How can the localauthority help?

Fatigue, pain and sensory symptoms.

Cognitive problems, difficulties with attention andmemory.

Relapses and hospital appointments.

Scribes or extra time to complete exams.

A member of staff to coordinate information andsupport from other practitioners, such as speech andlanguage therapist.

An individual health care plan drawn up betweenschool staff, parent(s), pupil and NHS staff.

Home tutoring.

There are a number of ways to manage these issues.Pupils with MS might benefit from:

Together, pupils, parents and schools can discuss allthese different options.

Setting a policy, agreed with relevant agencies, forsupporting pupils who are unable to go to schoolbecause of medical needs.

Establishing referral systems for home-based andhospital education, with appropriate referral forms.

Making referrals for home-based or hospitaleducation as simple as possible, with appropriatereferral forms available and publicised to anyprofessionals who might need to make a referral,whether teachers, health or social care professionals.

Making sure that pupils have access to educationfrom the start, if it's clear that they will be away fromschool for long or recurring periods.

Ensuring that pupils receive an education of similarquality to that available in school, with flexiblearrangements.

Ensuring continuity for pupils, even when educationis delivered by specialist services outwith the homeauthority.

How can schoolshelp?

How can teachershelp?

Schools can support pupils with MS by:


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Ensuring that appropriate reviews happen for pupilsreceiving education outwith school.

Setting a policy for schools to provide adequatesupport for pupils who need additional support withinschools in their area.

Implementing relevant policies and appointing aperson responsible for supporting pupils withadditional needs because of a medical condition.

Ensuring health and safety procedures are adaptedto take account of pupils with additional needs,e.g. including extra time for disabled pupils toevacuate the building during a fire drill or emergency.

Making sure all those who help provide education forthe pupil have proper information about their needsand capabilities - and have a programme of work tofollow.

Maintaining contact with health professionalsinvolved in meeting the pupil's healthcare needs.

Maintaining contact with the education authorityofficer responsible for additional support needs.

Providing support to help pupils re-integrate atschool after an illness.

Ensuring that pupils are kept informed about schoolsocial events and after-school clubs.

Teachers can help support pupils with MS by:

Educating themselves about the issues that a pupilwith MS could face in school.

Learning about MS through the MS Society booklet,What is MS? or at www.mssociety.org.uk

Making and maintaining contact with the pupil'sspecialist MS Nurse.

How can parentshelp?


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Letting the local authority and school know if yourchild will be (or is likely to be) away from school formore than 15 working days (see page 9).

Encouraging your child to stay in contact with theirfriends - for example, through visits or online chat.

Free transport

An education authority may decide to provide freetransport so that a pupil with a medical conditioncan still attend school. The authority will usuallyconsult with the health board to make this decision.

Social work services also have the power to pay fortransport to and from college. Other potentialsources of funding for travel are the college'sdiscretionary support fund or a charitable trust.

Local authorities have a duty to ensure youngpeople with MS are not prevented from attendingcollege because of transport difficulties.

The law allows education authorities to provide freetransport even when they don't have a legal duty todo so (called the 'power of discretion'). This meansthat different education authorities may havedifferent policies about free transport.

Keeping a record of any work that is missed, to helpwith learning outwith school and when they return

The MS Society and other charities have information tohelp explain MS to different age groups and in differentlanguages and formats.

With the permission of the affected pupil, you mightwant to do something in your class or school to highlightthe issues they face, but be sure to talk it over with thepupil and their family first.

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Parents can help by:

What are a pupil’srights in theeducation system?


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i If you have questions about:

the duties and powers of education authorities

the safety of pupils

school transport issues

Contact Enquire, the Scottish advice service foradditional support for learning for issues about schools(and LEAD Scotland Information Service for collegeenquiries).

Scottish education law and Government initiativescreate a framework to make sure children and youngpeople benefit from education and reach their fullpotential.

The Education (Additional Support for Learning)(Scotland) Act 2004, as amended 2009

In schools and pre-schools: any child who needs more(or different) support to what is normally provided forthose of the same age, is said to have 'additionalsupport needs'.

Education authorities must identify any of their pupilswho may have additional support needs, make adequateand efficient provision of support as they require andkeep this under regular review. This might include, forexample, making adjustments to classrooms, alternativeapproaches to learning and teaching or ensuring extrasupport in exams.

The legislation is there to make sure children'sindividual needs are met, regardless of the reasons.This means that a formal diagnosis is not requiredfor support to be put in place.

Education authorities might also be asked to make anassessment of children and young people who are edu-cated at home or in private education. In these casesthe authority has a power, rather than a duty to help.

Child's planThis is a single plan to make sure all agencies involvedwork together in a coordinated way. It sets outeverything that needs to happen to ensure the child'swellbeing.

Coordinated support plan (CSP) This is more detailed than a 'Child's plan'. It's used forsome children and young people who need significantadditional support with their education. A CSP, althoughnot always required, is often used if more than one issueaffects a child's development.

If you are a parent, you can ask the education authorityto find out whether your child needs a CSP (or to reviewtheir existing plan).

You can ask the authority directly, or go through theschool. If a CSP is needed, the authority will appoint aCSP Coordinator, to make sure people carry out theactions included in the plan.

If a CSP is not required, the education authority mustexplain the reasons to you in writing. They still have aduty to identify and provide for your child's additionalsupport needs. This might be done through personallearning planning (see below) or with an individualisededucation programme (see below).

If you disagree with the decision, you have the right toappeal to an Additional Support Needs Tribunal (seebelow).

Personal learning planning (PLP)Personal learning planning sets out goals that relatespecifically to a child's circumstances. All childrenshould be involved in personal learning planning, and formany this will be sufficient to meet their needs. Bymonitoring progress in achieving these goals, theirprogress can be assessed and action taken, if required.

Individualised educational programmes (IEP)An IEP is a detailed plan for your child's learning. Itdescribes in detail the nature of a child's additionalsupport needs, including short term goals and how theywill be helped to reach them. Education authoritiesshould involve health in this process, if appropriate.Schools and local authorities are not legally required toprepare an IEP for your child, and IEPs are not legaldocuments.

In some authorities these plans will have differentnames.


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Additional Support Needs Tribunals forScotland

Parents and young people aged 16 and over can make areference to an Additional Support Needs Tribunal fordifferent reasons, including:


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a decision to prepare (or not to prepare) a CSP(coordinated support plan)

the time taken to prepare a CSP or review an existingplan

a decision to discontinue a CSP

failure to provide the support in the CSP

The Tribunal has produced a guide for people using orthinking of using the tribunal system. You can get copiesfrom the Additional Support Needs Tribunals forScotland (details on page 15).

The Scottish Child Law Centre provide a nationaladvocacy service to help young people prepare andpresent a case at tribunals (details on page 13).

Resolving disagreements

Education authorities must provide arrangements forresolving disputes and publish information on this. Theymust also provide independent mediation services, freeof charge, for parents and young people. Parents andyoung people are entitled to have a supporter oradvocate present at tribunal hearings or mediationsessions.

Getting It Right For Every Child

Getting It Right for Every Child (GIRFEC) is the ScottishGovernment's national programme to provide aconsistent, supportive, coordinated approach for allchildren and their families.

Information and guidance is available for anyoneinvolved in a child's education, including parents,teachers, schools, nurseries and housing organisations.GIRFEC has a number of useful tools to help parents,teachers and children understand the support theyshould be getting and how things should work.


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GIRFEC resources are available atwww.scotland.gov.uk/Topics/People/Young-People/gettingitrightIf you don't have access to the internet, call theInformation Team in Scotland on 0131 335 4050.

Named person - As part of GIRFEC, every child andyoung person will have a 'named person' responsible formaking sure that the child has the right help in place tosupport their development and wellbeing. The supportprovided must be timely, proportionate and appropriate.The named person might be a health care professionalor a teacher, where the child is of school age.

Lead professional - Where a child needs help from twoor more agencies, a 'lead professional' will be appointedto coordinate planning and make sure all agenciesprovide the appropriate network of support around thechild. For example, if several assessments are needed,the lead professional should ensure that informationabout the child is not duplicated and that parents andchildren are not put under stress. The lead professionalmight be the same person as the named person.

Moving on from school

When a pupil reaches an age when they are no longerobligated to stay in school, the local authority shouldprovide information and advice about their optionsincluding:

staying on at school

entering further or higher education

participating in national training programmes

taking part in community learning opportunities

Request and take into account information andadvice from other agencies that are likely to beinvolved in support after the pupil leaves school. Thismust be done at least 12 months before they areexpected to leave.

The education authority must:

Managing absencefrom school

School and education authority responsibilities

Education authorities have a duty to make specialarrangements for pupils who can't attend a suitableschool because of prolonged ill-health. They mustenable the pupil to receive their education elsewhere.

This might mean, for example, arranging access to hometeaching, a hospital school, a hospital teaching service,or an integrated hospital and home education service.The education authority should also have a writtenpolicy setting out how it will meet its responsibilities.

These special arrangements should come into effect'without undue delay', according to the Standards inScotland's Schools etc. Act 2000.

Schools should usually make an automatic referral foreducation out with school after 15 school days ofcontinuous absence for medical reasons (or 20 schooldays of intermittent). The referral can happen straightaway if the absence is expected to last for at least thislength of time.

If a pupil has been taught in hospital, home teachingshould automatically take over when they aredischarged, if the total period of absence from school islikely be 15 days or more.

Parental responsibilities

Parents are responsible for making sure that their childattends school when they are well enough to do so. Andparents have a responsibility to tell the school if itbecomes clear that their child will be away from schoolfor a substantial amount of time for health reasons. Thisis especially important if they are likely to be off schoolfor more than three weeks (15 school days). In this case,parents should also notify the education authority.


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Seek and take account of the pupil's views whendeciding what information to share with agenciesthat may be working with them after they leaveschool.

Pass on relevant information and advice to anyagencies that will be supporting the pupil, with theirconsent. This must be done no later than six monthsbefore they leave school.

Taking medication atschool

Close cooperation between schools, parents, healthprofessionals and other agencies is crucial in order tohelp provide a suitably supportive environment for pupilswith health care needs to enable them to participate fullyin school activities.

Parental responsibilities

Parents or guardians have prime responsibility for theirchild's health and should provide schools withinformation about their child's medical condition. If apupil needs to have access to their medication atschool, parents should make an appointment to talk tothe 'responsible person' or lead professional about it assoon as possible. This person should be able to explainwhat support is available.

NHS board responsibilities

NHS boards must ensure that appropriate agreementsare in place with education authorities, confirming therespective responsibilities of each in relation to theadministration of medicines in schools (local protocolsand procedures, including training).

Relevant health staff will help schools draw up individualhealth care plans for pupils with health care needs, andmay be able to supplement information already providedby parents and the child's GP. Other healthprofessionals may also be involved in the care of pupilswith health care needs in schools.


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Helping pupils going back to school

Getting back to school after being away for a longtime can be daunting. When coming back to schoolafter an absence pupils might need to chooselessons that they like most to start with, to helpthem concentrate. Pupils should be encouraged tolet their friends know that they're coming back toschool and perhaps to meet up away from schoolahead of time to catch up and renew friendships ifthey haven't seen friends for a while.

Some pupils with MS will receive dedicated supportfrom a specialist nurse. These nurses often work as partof a specialist neurological rehabilitation team and workclosely with the primary health care team. They canprovide advice on the medical needs of an individualpupil, particularly when newly diagnosed and the pupil isadjusting to new routines.

The school's involvement

NHS boards, usually through the School Health Service,will provide advice and training for school staff inproviding for a pupil's needs. The main contact forschools is likely to be the school nurse.

Each educational establishment (e.g. school, pre-school,school hostel) must have a health and safety policy,which includes procedures for supporting pupils withhealth care needs, including managing medication. Dayto day decisions about administering medication willnormally fall to the Head teacher. Some staff may have'meeting the health care needs of pupils' as part of theirduties. For the majority, however, there is no legal dutythat requires individual staff to administer medication;this may be voluntary. When school staff membersvolunteer to give pupils help with their health careneeds, the head teacher should agree to their doing this,and must ensure that they receive proper support andtraining where necessary.

Under 'Health and Safety at Work' legislation, theeducation authority is responsible for both staff andothers who may be affected. This should includeprocedures for supporting pupils with health care needs,including managing medication.

The Scottish Executive produced guidance on 'Theadministration of medicines in schools 2001'.


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i www.edlaw.org.uk/guidance/admin.pdf

Equality legislation Schools and education authorities have had a duty toprovide reasonable adjustments for disabled pupilssince 2002 (originally under the Disability DiscriminationAct 1995 (DDA) and, from October 2010 under theEquality Act 2010). You can learn more about theEquality Act 2010 on the Equality and Human RightsCommission website www.equalityhumanrights.com i


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Useful organisations

The duty is 'to take such steps as it is reasonable tohave to take to avoid the substantial disadvantage'to a disabled person caused by a provision, criterionor practice applied by or on behalf of a school or bythe absence of an auxiliary aid or service.

The new element of the duty for schools is the provisionof auxiliary aids and services for disabled pupilseffective since 1 September 2012. Technical guidance isavailable online for both schools and higher educationproviders at www.equalityhumanrights.com/legal-and-policy/equality-act/equality-act-codes-of-practice.This may be helpful for school and education authoritystaff to understand and comply with the duty, includingthe new auxiliary aids and services provision.

EnquireThe Scottish advice service for additional support forlearning provides information to help families find theirway through the education and additional support needssystem. They also provide advice to practitionersworking with families, and to children and young peoplethemselves.

Helpline: 0845 123 [email protected]

Enquire's website for children and young peoplewww.enquire.org.uk/yp

Education Law Unit - Govan Law CentreScotland's expert legal resource in the field of schooleducation, the unit provides legal representation inappropriate education law cases to parents or pupils.Their solicitors provide representation in cases heard bythe Additional Support Needs Tribunals, Sheriff Courts,and the Court of Session.

Education Law Helpline: 0141 445 [email protected]

Lead Scotland Information ServiceInformation and advice for disabled learners over 16 andcarers thinking of taking up learning.


Equality Advisory and Support Service (EASS)This service replaced the Equality and Human RightsCommission Helpline in December 2012. It is aimed atindividuals who need more expert advice and supporton discrimination than advice agencies and other localorganisations can provide. Email enquiries can be sentvia the website below.

Telephone: 0808 800 0082Textphone: 0808 800 0084www.equalityadvisoryservice.com

CHIP+ (Children in the Highlands Information Point)CHIP+ offers information, support and advice to thefamilies and carers of children and young people withadditional support needs in Highland, and toprofessionals who work with them.

Telephone: 01463 [email protected]

KindredA voluntary organisation based at the Royal Hospital forSick Children in Edinburgh. Kindred providesinformation, advocacy and emotional support to parentsof children and young people with additional supportneeds and their carers.


The Scottish Child Law CentreThe National Advocacy Service for the additionalsupport needs tribunal for Scotland is available tochildren, young people, their families and carers whobelieve that they need to make a reference to theAdditional Support Needs Tribunal.

Telephone: 0131 667 6333 (or free for under 18's 0800328 8970)[email protected]


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The Law Society of ScotlandFind a solicitor or legal firm in your area of Scotland.

Telephone: 0131 226 7411Textphone: 0131 476 8359Fax: 0131 225 [email protected]

Association of Lawyers for ChildrenThe Association of Lawyers for Children is amembership organisation, including lawyers involved inwork relating to children, psychiatrists, psychologists,social workers, paediatricians and guardians, andorganisations seeking to promote the interests ofchildren and young people within the legal system.

Telephone: 020 8224 [email protected]

Disability Rights UKDisability Rights UK is a national charity working toimprove the living standards of disabled people.

www.disabilityrightsuk.org

Disabled Students Helpline: 0800 328 5050Advice on post-16 education, training and employmentissues for disabled people in England and generalinformation for students in Scotland and Wales on theEquality Act, welfare benefits and access to HigherEducation.Tuesday 11.30am-1.30pmThursday 1.30pm-3.30pm

The Family FundHelps families of disabled or seriously ill children under16. They give grants and information related to the careof the child, including holidays, leisure, laundryequipment, driving lessons and lots more.

4 Alpha CourtMonks Cross DriveYork YO32 9WN

Telephone: 08449 744 099Textphone: 01904 [email protected]


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Education ScotlandHM Inspectorate for Education (HMIE) and Learning andTeaching Scotland (LTS) were combined in 2011 into anew national body to support quality and improvementin Scottish education. You can find more information ontheir website: www.hmie.gov.uk/Default.aspx

Additional Support Needs Tribunals for ScotlandASNTS considers appeals (references) made by parentsand young people against decisions of EducationAuthorities on certain matters relating to the provision ofadditional support. If you need general advice on how tomake a 'reference' to the Additional Support NeedsTribunals for Scotland you can contact:

Helpline: 0845 120 2906Fax: 0141 242 [email protected]


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Available from the MS Society:

Childhood MS - a guide for parents

What is MS?

Annie and Dan talk about MS - A DVD with puppetsexplaining MS for ages 0-5 years.

Living with the effects of MS

www.youngms.org.ukA website dedicated to children and teenagers whoeither have MS or who are affected by MS.

Other resources:

Keep S'myelinA colourful, engaging, informative and reassuringnewsletter for parents and children from the MS Societyin the USA. Available online atwww.nationalmssociety.org

Useful resources

The parents’ guide to additional support for learningIf you're new to additional support for learning itexplains - in simple language - your and your child'srights, the roles and responsibilities of staff involvedwith your child, what to expect at meetings and muchmore.

Available from EnquireTelephone: 0131 222 [email protected]

Additional Support for Learning bookletFor parents of children educated in the Highland Councilarea, available from CHIP+

Telephone: 01463 [email protected]/documents/education/asl-booklet-final.pdf

The Administration of medicines in schoolsGuidance document produced by Scottish Executive2001www.scotland.gov.uk/Publications/2001/09/10006/File-1


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More from the MSSociety

The MS Society is the UK's largest charity dedicated tosupporting everyone whose life is touched by MS. Weprovide a freephone MS Helpline; grants for homeadaptations, respite care and mobility aids, educationand training, support for specialist MS nurses; and awide range of information.

For more details, visit our website or contact theInformation Team in Scotland on 0131 335 4050(weekdays 10am-4pm) or [email protected].

MS HelplineThe MS Helpline offers confidential emotional supportand information to anyone affected by MS, includingfamily, friends, carers, newly diagnosed or those whohave lived with the condition for many years. Calls canbe made in over 150 different languages, via an interpreter.

Call freephone 0808 800 8000 (weekdays 9am-9pm,except bank holidays) or email [email protected]

Other usefulpublications forparents


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Authors and contributors

Disclaimer: We have made every effort to ensure that theinformation in this publication is correct. We do notaccept liability for any errors or omissions. The law andgovernment regulations may change. Be sure to seeklocal advice from the sources listed.

Suggestions for improvement in future editions are welcomed. Please send them [email protected] for the attention of theScotland Information Team.

Edited by Marion MacNeil and James Bailey

With thanks to Iain Nisbet of the Education Law Unit,Enquire, CHIP+ and all the people affected by MS whocontributed to this publication.

© Multiple Sclerosis Society 2013First edition, April 2012Second edition March 2013

This title will be reviewed within three years.

Download from www.mssociety.org.ukIf you don't have access to a printer and would like aprinted version of this factsheet, or any other MSSociety publication or DVD, call the ScottishInformation Team on 0131 335 4050 or [email protected]

Multiple Sclerosis Society. Registered charity nos.1139257 / SC041990. Registered as a limited companyin England and Wales 07451571.

Mae Multiple Sclerosis Society yn elusen gofrestredig1139257 / SC041990 a chwmni cyfyngedig dan warrantyn Lloegr a Chymru (07451571).

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