Spotlight On...In every issue we feature articles w<strong>here</strong> we talk about differentaspects of education and cover ideas about possible sources offinancial support to help you.EducationParent Partnership ServicesThis article looks at the role of ParentPartnerships, who can be a great sourceof local support as you work to ensureyour child's educational needs are met.What are Parent Partnership Services?Parent Partnership Services (PPS) arestatutory services offering information,advice and support to parents andcarers of children and young peoplewith special educational needs (SEN).PPS have a role in making sure thatparents' views are heard andunderstood and that these viewsinform local policy and practice.PPS are based with a voluntaryorganisation, with the Local Authority(LA) or Children's Trust.As statutory services (ones that haveto be provided by law) PPSs are allfunded by their Local Authority.However they are all expected to be at'arms length' of the LA and to provideimpartial information, advice andsupport to parents. Some services areWritten byIsabel Baumberbased outside of the LA with localcharities/organisations, some arebased in LAs but in their own buildings,while others may share offices withother LA services such as schools,children's centres, support services,etc.What services do Parent Partnershipoffer?The services offered by individual PPSwill vary but all will be able to provideinformation and advice about:• How special educational needsare identified and assessed byschools and the local authority.• Who parents can talk to in a schoolor LA about their concerns.• The SEN Code of Practice, thestatutory assessment process andstatements.• Parents'/carers' rights and responsibilities.• Meetings and reviews about achild's needs.• How progress is monitored andreviewed.• What parents can do if they are nothappy with a decision made abouttheir child's SEN.Please don't hesitate to contact the LHMoffice if you have any queries about anyaspect of education. We have bookletavailable on 'Early Years and InfantSchool', 'Junior School' and 'Transition toSecondary School' which are availablefree of charge to members. We also havea more detailed pack for families whofeel that their child many need additionalsupport in school.We also have a Benefits Booklet, whichcovers a whole range of ideas.We'd be really pleased to hear about anyother ideas members have.How does Parent Partnership work?PPS are free, impartial local services.PPS work directly with parents andcarers of children and young peoplewith SEN.PPS provide confidential information,advice and support.PPS work in partnership with parents/carers, schools, the local authority andother agencies.PPS support parents to inform andinfluence local policy and practice.PPS enable parents and carers tomake informed choices and decisionswith confidence.How can I find my local ParentPartnership?The national website is www.parentpartnership.org.uk. Information forthis article was taken from this website.On the home page, t<strong>here</strong> is a map to linkto your region and local contact details.Please feel free to contact the office withany queries. We can also put you intouch with other families who may haveexperienced similar situations to you.12BenefitsDisability Living Allowance (DLA)T<strong>here</strong> are many changes beingproposed to the benefits system, andat <strong>Little</strong> <strong>Hearts</strong> <strong>Matter</strong>, we will do ourvery best to keep you informed ofchanges, and influence those changesw<strong>here</strong>ver possible.We understand from our members thatit is getting more difficult to successfullyclaim DLA at the moment, so wouldlike to offer the following suggestionsto help you.Ask for the LHM pack to give you ideasof sample answers to adapt.Remember how important it is to stresswhat is different about your child's careneeds when compared to a hearthealthychild of the same age.Think carefully about the people youinclude to provide extra information aboutyour child - it is very likely that the DWPwill actually contact them for a report.Ask for help e.g. from LHM, your healthvisitor, a local charity, Citizens AdviceBureau, etc. You can also ring theBenefit Enquiry Line (0800 88 22 00)for help with completing the form.Ask for a second opinion before yousend the application form in.Keep repeating information if it isrelevant to the question - don't worryabout having already made the samepoint earlier in the form.Get supporting letters from peoplesuch as LHM, health visitor, nursery,school, Cardiac Liaison Nurse,community nurse.Make the most of the last page andpaint a full picture of your child, theirdifficulties and how it impacts on thefamily.Always keep a copy of your form whenyou send it in.Remember that the person who readsyour form is not a healthcareprofessional - they may not even haveheard of your child's diagnosis before,so tell them everything about how thecondition impacts on everyday life.If you are renewing your claim, you willonly be sent one letter (six monthsbefore your award runs out) - t<strong>here</strong>won't be any other reminders. Beprepared for the renewal process totake longer than it has in the past.Don't give up! If you are not awardedthe level you think is appropriate, or ifyou get a letter saying you are noteligible at all, the first thing you can dois phone to ask for a reconsideration,w<strong>here</strong> someone different will look atyour claim. You can also write to startan appeal. It is sensible to ask for anexplanation of how the decision hasbeen reached, and also for copies ofall the information they have aboutyour child, including medical reports.Information about DLA can be foundon the government website www.direct.gov.uk - look at the 'Disabledpeople' section, then see the 'Financialsupport' menu. You can also contactthe Benefit Enquiry Line on 0800 88 2200.
Ask the ExpertsHere we ask professionals to answer some of the commonquestions asked by our members.Suzie HutchinsonChief Executive<strong>Little</strong> <strong>Hearts</strong> <strong>Matter</strong>We are planning a holiday abroad and we areare wondering w<strong>here</strong> it would be safe to go?It is always lovely to be able to plan aholiday abroad but it is also importantto look at each destination, the travelto the country and the services that areavailable when you get t<strong>here</strong> beforebooking anything especially when youhave a child with a cardiac disability.Here are some tips to think about whenplanning your holiday.1. Speak to your cardiologistFirstly it is essential to check that yourchild is well enough to go abroad for aholiday. Speak to your cardiologistabout holidays when you have aplanned outpatient's appointment. Ifthey are happy for your child to goabroad start looking for suitabledestinations.2. How far away is your destination?Low level, short flights are possiblefrom early on but many cardiologistsprefer that long distance high altitudeflights are not attempted until after thethird (Fontan) stage of surgery.3. Will you need oxygen on the flight?Your cardiologist will tell you if youneed to plan to take oxygen with youon the flight. All aircraft have a smallbottle of oxygen on board but if t<strong>here</strong> isan increased risk that your child mayneed oxygen during a flight they willexpect you to supply your own. Thismay affect the cost of your holiday asyou may need to book an extra seat totransport the oxygen and you will needto arrange to refill a bottle at yourdestination if you have used the supplyon the flight.4. Which are the safest destinations?When planning w<strong>here</strong> to go on holidayit is important to consider not only thebeach, pool and/or sunshine, you alsoneed to look at the medical careprovided locally and how your childwould be transported to a hospital ifthey needed more extensive treatment.Island holidays may not be a good ideaif transport to medical care on themainland is not easy.5. What sort of insurance do I need?Whenever you travel abroad it is agood idea to ensure that you have fullmedical insurance, but it is essentialwhen travelling with a child who has adisability. Insurance companies willexpect a detailed letter from yourcardiologist that states that your childis fit to travel. When planning yourinsurance make sure that t<strong>here</strong> isprovision for your child to be flownhome if needed and that one parentcan accompany them.6. How hot is your destination?Although children with heart problemslike warm water to swim in and lovelysunshine, if it is too hot they canbecome dehydrated very quicklyespecially if they are on diuretics.Think about the heatat the time of year youare travelling. Augustholidays can beblisteringly hot. If yourchild is on Warfarin,dehydration can affecttheir INR levels. It isuseful to take aCoagucheck machinewith you on holiday tocheck dosage andclear instructions onchanges in each dailydose if the INR levelchanges.7. MedicationMany of the children'smedications need tobe kept refrigerated so check to see ift<strong>here</strong> is a fridge available in yourroom. Think about how muchmedication you wish to take with youand plan in advance your medicationrequest from your doctor.8. Local travel?Think about how you are going to getaround when you get to your holidaydestination. Is the beach near yourhotel or holiday home? Do you want togo exploring? Will you need apushchair or a wheelchair to makesure that your disabled child can takepart in everything whilst you are away?9. Holiday typeIf your holiday is an activity based one,will your disabled child be able to takepart safely? How will you split activitiesif your heart-healthy children want todo something different?Remember that the LHM team areavailable if you need any help withplanning your holiday.13