Inside - Novita Children's Services

8Self-management of mobility and equipmentwith support from your Child and Adolescent Service (CAS) PhysiotherapistAFTER THE BAND STOPS…9The year is already moving alongat a rollicking pace and we areall flat out juggling schooldrop-offs /pick-ups, work, recreationalactivities and managing those dreadedwinter sniffles. There barely seemsenough time to get washing, cookingand cleaning under control, let alonekeeping tabs on your child’s everchangingequipment and mobility needs.Novita’s Child and AdolescentService (CAS) supports school-agechildren living with a physical disability,and their families, to provide servicesthat meet their individual needs. Asyour child moves into the Child andAdolescent Service, there will be anincreased focus on self-managementof concerns.Self-management is what you as theparent/carer can do, or where possibleyour child can increasingly do, tomanage the impacts of disability. It isnot self-treatment and requires goodself-management support to beeffective. Self-management support iswhat CAS staff provide.When your child turns 18 andtransitions to adult services, having theknowledge and skills to self-managewill be essential, so please use yourtime at Novita to learn how and whento ask for support when required.CAS services are “request based”– you need to ask for the services youneed. There are waiting lists for mostservices, so planning requests plays animportant part in obtaining the supportyou seek.As a parent/carer of a child with adisability we see you as experts onyour child’s individual needs. As youand your child move through your timewith CAS you will continue to developskills to assist you to recognise yourchild’s changing physical andequipment needs as they arise (orpredict them before they become issues).To help you along the journey,here are some tips on what to monitor,and when to request input from yourCAS Physiotherapist.EQUIPMENTFor equipment to offer support, comfortand assistance, it needs to fit well andbe safe. Growth and physical changes(muscle tightness, muscle weakness,spinal posture) can have a huge impacton the effectiveness of equipment.When you notice your child has grown(again!) and you need to buy moreclothes/shoes, it is the ideal time to havea look at them using their equipment.Seating: Whether looking at awheelchair, a pusher, a school chair ora kitchen chair, check the following:• Feet are flat – pointing forwards andwell supported on the footplates.• Knees are in a straight line with thehips – not rubbing together, floppedout to the side or at an uneven height.• Trunk and pelvis is in the middle– not leaning or shifted to one side.• Head is in the middle with chintucked slightly.• Elbows are at a right angle, or justbelow, when resting on armrests or tray.• Chest should be lifted, notslumped forward.Walkers: Walkers are prescribed toachieve a variety of goals. Whenlooking at your child in their walker,keep these goals in mind, as some ofthe following may/may not be relevantfor every child:• Trunk posture – trunk must beupright or leaning forwards slightly.• Arms, if used for weight-bearing,should be outstretched and straight(or only slightly bent) at the elbows.• Legs, when taking weight, should bestraight (or only slightly bent)at the knees.• Feet, when taking weight, should beflat and toes should not drag alongthe ground.If you have any concerns about the fit,support or effectiveness of your child’sequipment, please contact CAS torequest a physio review. Throughassessment, the physiotherapist will beable to determine the best way forwardto maximise the benefit your childgains from their equipment.A physiotherapist can also reviewany changes you notice or concernsyou have about the following:Muscle tightness/joint rangeof movementChanges can present as:• complaints of pain• increasing fatigue when walking• change in walking pattern• increase in falls• refusal/reluctance to wear AFO’s(Ankle Foot Orthoses)• red marks on skin on removal of AFO’sYour CAS Physiotherapist will expertlyassess the problem and assist withplanning of appropriate interventions.These can include a range ofoptions including:• development of a home stretchingprogram• serial casting, night splints• gait analysis• referral to an Orthotist (for newAFO’s, repairs, assessment)• referral to a Rehabilitation Clinic(further review, BoNT-A/Botox,surgical options).Manual HandlingYour back care as a parent/caregiver isvital – please request a review of yourpractices if you have any concerns orthere have been significant changes inyour child’s weight or health.If your child needs to be lifted orhoist assisted, at school/OHSC, tomove/transfer/toilet, an up-to-dateTransfer and Positioning Care Plan isrequired. These can be written/reviewed by your CAS physiotherapistand a review should be requested atleast a month before it is due to expire.Gross motor skills and recreationYour physiotherapist can advise of thebest ways to develop your child’sphysical skills, fitness, strength andcontrol in gross motor activities. This caninclude advice for schools on inclusion ofchildren with disabilities into activitieswith their peers (eg PE classes).Remember also that you canself-refer to ConnectABILITY bycontacting our Recreation Officer whowill assist you with linking intocommunity recreation activiities thatcan enhance your child’s physicalabilities and well-being (see articleelsewhere in this issue).For all equipment repairs, contactDomiciliary Equipment Service (DES)on 1300 130 302.P: CAS North – 8182 1000CAS South – 8172 9200E: child&adolescent@novita.org.auLong after the flash bulbs havestopped popping, the bandshave packed up and theendless social whirl has passed,happy memories of a time longgone reunite former Mrs SouthAustralia Quest entrants and theirfriends each year as they gather toraise funds for the many childrenserved by Novita.These quest entrants andsupporters have been working hardfor Novita, in some cases for up to40 years. They are joined by manyothers motivated to make a littlechild’s life better.Each year this lively communityraises in excess of $100,000through the staging of golf days,high teas, goods and servicesauctions, and girls’ nights out.Their commitment to one of life’smost noble causes: the welfare ofchildren living with disabilities,impels them to continue theirinvaluable work. Their only rewardis the happy smiles of the childrenthey reach out to help each yearand the joy of families whose livescan be transformed by Novita’scommitment to their little ones.Recognising the loyalty of itsauxiliary volunteers Novita stagedits annual luncheon for them inearly May. Coinciding withVolunteers Week, 65 AuxiliaryVolunteers from around SA enjoyedone another’s company andentertainment provided by Lindi-Jane and Fluffie-Feline fromSnappy Productions.It was Novita’s way of saying:Thank you very much for a jobsuperbly and faithfully done!