rehabilitation - department of paediatrics & adolescent...

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1 Rehabilitation Institutional Care & Community Care © Copyright 2009 Rehabilitation Rehabilitation Institutional Care & Community Care Institutional Care & Community Care Eliza WONG Eliza WONG 28 Mar 2009 28 Mar 2009 Content Content Definition of rehabilitation Definition of rehabilitation History and development of History and development of rehabilitative service in HK rehabilitative service in HK Paediatric Paediatric rehabilitation rehabilitation Hospital care VS community care Hospital care VS community care Case sharing Case sharing Rehabilitation Rehabilitation Enable people with disabilities to Enable people with disabilities to reach and maintain optimal physical, reach and maintain optimal physical, sensory, intellectual, psychological sensory, intellectual, psychological and / or social function and / or social function WHO WHO Evolution of Rehabilitation Concept (HK) Evolution of Rehabilitation Concept (HK) Early Stage (before 1950) Early Stage (before 1950) Piece meal Piece meal By charitable bodies and voluntary By charitable bodies and voluntary agencies agencies Temporary assistance Temporary assistance 1950 1950 - 1970 1970 More systematic More systematic Government support Government support Provide training etc. Provide training etc. Development of Rehabilitation Policy Development of Rehabilitation Policy Year of 1977 Year of 1977 -- -- White Paper on White Paper on Rehabilitation Rehabilitation – Integrated the Integrated the Disabled into the Community Disabled into the Community Year of 1995 Year of 1995 -- -- White Paper on White Paper on Rehabilitation Rehabilitation – Equal Opportunities and Equal Opportunities and Full Participation for Disabled Full Participation for Disabled Evolution of Rehabilitation Concept (HK) Evolution of Rehabilitation Concept (HK) Policy Formulation & Co Policy Formulation & Co- ordination of ordination of Services Services The The Labour Labour & Welfare Bureau & Welfare Bureau Review & co Review & co-ordinate with Government ordinate with Government Dept. & NGO Dept. & NGO Strategic direction & priorities for Strategic direction & priorities for rehabilitation policies and services rehabilitation policies and services Development of Rehabilitation Policy Development of Rehabilitation Policy

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Page 1: Rehabilitation - Department of Paediatrics & Adolescent ...paed.hku.hk/services/pccn/2009/handout/Rehabilitation.pdf · Case sharing Rehabilitation ... Poor coordination of the Jaw,

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Rehabilitation Institutional Care & Community Care

© Copyright 2009

RehabilitationRehabilitationInstitutional Care & Community CareInstitutional Care & Community Care

Eliza WONGEliza WONG28 Mar 200928 Mar 2009

ContentContent

Definition of rehabilitationDefinition of rehabilitationHistory and development of History and development of rehabilitative service in HKrehabilitative service in HKPaediatricPaediatric rehabilitationrehabilitationHospital care VS community careHospital care VS community careCase sharingCase sharing

RehabilitationRehabilitation

Enable people with disabilities to Enable people with disabilities to reach and maintain optimal physical, reach and maintain optimal physical, sensory, intellectual, psychological sensory, intellectual, psychological and / or social functionand / or social function

WHOWHO

Evolution of Rehabilitation Concept (HK)Evolution of Rehabilitation Concept (HK)

Early Stage (before 1950)Early Stage (before 1950)Piece mealPiece mealBy charitable bodies and voluntary By charitable bodies and voluntary agenciesagenciesTemporary assistanceTemporary assistance

1950 1950 -- 19701970More systematicMore systematicGovernment supportGovernment supportProvide training etc.Provide training etc.

Development of Rehabilitation PolicyDevelopment of Rehabilitation PolicyYear of 1977 Year of 1977 ---- White Paper on White Paper on Rehabilitation Rehabilitation –– Integrated the Integrated the Disabled into the CommunityDisabled into the Community

Year of 1995 Year of 1995 ---- White Paper on White Paper on Rehabilitation Rehabilitation –– Equal Opportunities and Equal Opportunities and Full Participation for Disabled Full Participation for Disabled

Evolution of Rehabilitation Concept (HK)Evolution of Rehabilitation Concept (HK)

Policy Formulation & CoPolicy Formulation & Co--ordination of ordination of ServicesServices

The The LabourLabour & Welfare Bureau & Welfare Bureau Review & coReview & co--ordinate with Government ordinate with Government Dept. & NGODept. & NGOStrategic direction & priorities for Strategic direction & priorities for rehabilitation policies and servicesrehabilitation policies and services

Development of Rehabilitation PolicyDevelopment of Rehabilitation Policy

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Policy Objective for Rehabilitation (HK)Policy Objective for Rehabilitation (HK)

Preventive MeasurePreventive MeasureHelp persons with disabilities develop their Help persons with disabilities develop their physical, mental, and social capabilities to physical, mental, and social capabilities to the fullest extent which their disability the fullest extent which their disability permitspermitsDesign on Barrier Free AccessDesign on Barrier Free Access

To ensure their overall well being, inclusion in the To ensure their overall well being, inclusion in the community and achieve the common mission community and achieve the common mission ““equal equal opportunities and full participationopportunities and full participation””

Rehabilitation Services (HK)Rehabilitation Services (HK)

Prevention & Early IdentificationPrevention & Early IdentificationSpecial Education & TrainingSpecial Education & TrainingVocational RehabilitationVocational RehabilitationMedical RehabilitationMedical RehabilitationSocial Rehabilitation ServicesSocial Rehabilitation ServicesHousing, Residential CareHousing, Residential CareTransport, Access FacilitiesTransport, Access FacilitiesWelfare AllowanceWelfare AllowanceSports & RecreationSports & Recreation

Improve the functional abilityImprove the functional abilityPromote independence Promote independence Promote quality of lifePromote quality of lifeBack to the communityBack to the community

Goal of RehabilitationGoal of Rehabilitation

What about Children?What about Children?

Growth and DevelopmentGrowth and Development

Normal development is a function of Normal development is a function of the maturity of the nervous system the maturity of the nervous system

and on experiencesand on experiences

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Problem of Interference of Normal Problem of Interference of Normal Maturation of the Brain by the LesionMaturation of the Brain by the Lesion

Retardation or arrest of normal Retardation or arrest of normal developmentdevelopmentNumerous aspects of disabilities Numerous aspects of disabilities

LanguageLanguage

EpilepsyEpilepsy

FeedingFeeding Vision & Vision & HearingHearing

MobilityMobilityLearning Learning difficultydifficulty

Cerebral Palsy

World Health Organization World Health Organization (ICF)(ICF)

IInternational nternational CClassification of lassification of FFunctioning, Disability, and unctioning, Disability, and HealthHealth

A model to guide clinical thinking, A model to guide clinical thinking, practice for children with practice for children with developmental disabilitiesdevelopmental disabilities

International Classification of International Classification of Functioning, Disability & Health (ICF)Functioning, Disability & Health (ICF)

Health conditionHealth condition(Disorder or disease)(Disorder or disease)

ICDICD--1010

Body functions/StructureBody functions/Structure(Impairment)(Impairment)

ActivityActivity(Disability)(Disability)

ParticipationParticipation(Handicap)(Handicap)

Environmental Factors

Personal Factors

Health ConditionHealth Condition

Cerebral PalsyCerebral Palsy

ActivitiesActivitiesMobilityMobility

Self Self ––carecareObject manipulationObject manipulation

Written communicationWritten communication

ImpairmentImpairmentSkeletal alignmentSkeletal alignmentRange of motionRange of motion

Muscle performanceMuscle performanceFitnessFitness

ParticipationParticipationInvolvement in home life, Involvement in home life,

education, community education, community event and social event and social

relationshiprelationship

Personal FactorsPersonal FactorsAgeAge

GenderGenderInterestInterest

PersonalityPersonalitySelfSelf--EfficacyEfficacy

Environmental Environmental FactorsFactors

AccessibilityAccessibilityAccommodationAccommodationPhysical supportPhysical support

Emotional supportEmotional supportPalisanoPalisano et al 2004et al 2004

Assessment of a Child with DisabilityAssessment of a Child with Disability

Knowledge of normal growth Knowledge of normal growth pattern functional milestones and pattern functional milestones and potential deviation is important to potential deviation is important to the comprehensive management of the comprehensive management of children with developmental or children with developmental or acquired disabilities acquired disabilities

Milestone in Child DevelopmentMilestone in Child Development

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3 months3 monthsSupports on forearms in proneSupports on forearms in proneHold head up steadilyHold head up steadilyHands open restHands open restCoosCoosAnticipates feedingAnticipates feedingFollows in circular fashionFollows in circular fashion

Milestone in Child DevelopmentMilestone in Child Development

6 months6 months

Sits well unsupportedSits well unsupportedReaches with either hand; Transfers Reaches with either hand; Transfers cubescubesBabblesBabblesSense of belonging to a central personSense of belonging to a central person

Milestone in Child DevelopmentMilestone in Child Development

2 years2 years

Walks up and down stairs aloneWalks up and down stairs aloneTurns one page; Imitates vertical strokeTurns one page; Imitates vertical strokeUses 2 word sentenceUses 2 word sentenceFeeds doll with bottleFeeds doll with bottleBegins toilet trainingBegins toilet training

Milestone in Child DevelopmentMilestone in Child Development3 years3 years

Pedals tricyclePedals tricycleUp and stairs alternate feetUp and stairs alternate feetCopies circleCopies circleUses 3 word sentence. Uses 3 word sentence. Minimum 250 wordsMinimum 250 wordsKnows age, sexKnows age, sexGroup playGroup play

Milestone in Child DevelopmentMilestone in Child Development

4 years4 years

Hops, skipsHops, skipsCatches ball with handsCatches ball with handsKnow Know colourscolours, ask question, ask questionButton clothsButton clothsPlay well in groupPlay well in group

Milestone in Child DevelopmentMilestone in Child Development5 years5 years

Jumps over low obstaclesJumps over low obstaclesDraws man with all body partsDraws man with all body partsFluent speechFluent speechPlays competitive gamesPlays competitive games

Milestone in Child DevelopmentMilestone in Child Development

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7 years7 years

Continue refinement of skillsContinue refinement of skillsEats with fork and spoonEats with fork and spoonSelf groomingSelf groomingFact Vs fictionFact Vs fiction

Milestone in Child DevelopmentMilestone in Child DevelopmentAdolescenceAdolescence

Skills refinedSkills refinedAbstract thoughts/ hypothesisAbstract thoughts/ hypothesisStage of identity Vs role confusionStage of identity Vs role confusion““GroupGroup”” identityidentity

Milestone in Child DevelopmentMilestone in Child Development

PaediatricPaediatric RehabilitationRehabilitation

Acquired Acquired DisabilitiesDisabilities

(Trauma / (Trauma / Disease)Disease)

Congenital Congenital

Disabilities Disabilities (Congenital(Congenital

Origin)Origin)

Common Congenital DisabilitiesCommon Congenital Disabilities

Cerebral palsyCerebral palsyMental retardationMental retardationSpinal bifidaSpinal bifidaJoint diseaseJoint diseaseSkeletal disorderSkeletal disorderNeuromuscular diseaseNeuromuscular diseaseNeurometabolicNeurometabolic diseasedisease

Common Acquired DisabilitiesCommon Acquired Disabilities

Head InjuryHead InjurySpinal cord injurySpinal cord injuryBrain injury/ Surgical Brain injury/ Surgical interventionsinterventionsBurnsBurnsAmputationsAmputations

Functional DisabilitiesFunctional Disabilities

Visual problemVisual problem

BlindnessBlindness

Low visionLow vision

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Functional DisabilitiesFunctional Disabilities

Hearing problemHearing problemFeeding problemFeeding problemLearning difficultiesLearning difficultiesAttention deficitAttention deficitAutisticAutistic

Care & Management for Care & Management for

Children with DisabilitiesChildren with Disabilities

ReRe--HabilitationHabilitation

Habilitation Habilitation

Rehabilitation Vs HabilitationRehabilitation Vs Habilitation

Acquired physical Acquired physical disabilitydisability

Loss of previously Loss of previously mastered skillsmastered skillsRestoration of lost Restoration of lost functionfunction

Congenital Congenital anomalies, anomalies, neuroneuro--developmental developmental delaydelay……Do not have normal Do not have normal abilities early in abilities early in lifelifeAcquisition of new Acquisition of new function function

RehabilitationRehabilitation HabilitationHabilitation

Relearn of previous Relearn of previous skills. In essence, skills. In essence, management of management of changechangeRequire Require adjustment to adjustment to alter functional alter functional ability and life ability and life stylestyle

Develop new skills to Develop new skills to enable to function enable to function within given within given environmentenvironmentDevelop new skills to Develop new skills to achieve maximum achieve maximum potential potential

RehabilitationRehabilitation HabilitationHabilitation

Rehabilitation Vs HabilitationRehabilitation Vs Habilitation

Uniqueness of Uniqueness of PaediatricPaediatricHabilitation/RehabilitationHabilitation/Rehabilitation

Concept of plasticity of Concept of plasticity of childrenchildren’’s brainss brains

Focus on developmentally Focus on developmentally & functional abilities & functional abilities

support caresupport carePromotion of familyPromotion of family--centredcentred carecare

Concept of Plasticity of Concept of Plasticity of ChildrenChildren’’s Brainss Brains

Early intervention Early intervention improve improve outcomeoutcomePeriodical rePeriodical re--evaluation, regular evaluation, regular interval assessment interval assessment update the update the status of childrenstatus of childrenPlanning and intervention rePlanning and intervention re--adjustment adjustment changing needs changing needs

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Promotion of FamilyPromotion of Family--CentredCentred CareCare

Child Child integral part of a familyintegral part of a familyHome Home central focus of a childcentral focus of a child’’s s worldworldCoCo--ordination of care, with family ordination of care, with family as part of healthcare teamas part of healthcare team

Assist family share an important Assist family share an important role in shaping the childrole in shaping the child’’s futures future

Focus on Developmentally and Functional Focus on Developmentally and Functional Abilities Support CareAbilities Support Care

Assessing childrenAssessing children’’s developmental profile s developmental profile (current development in physical, cognitive, (current development in physical, cognitive, social and emotion)social and emotion)Assessing childrenAssessing children’’s functional abilities s functional abilities (understanding what a child actually does)(understanding what a child actually does)Planning creative strategies Planning creative strategies ------ address on address on unique developmental needsunique developmental needsPredict and planning short term/long term Predict and planning short term/long term realistic goals realistic goals

The Child & The Child & family with family with

Special needsSpecial needs

Health Care Services:Health Care Services:

•• Preventive measurePreventive measure•• MultiMulti--disciplinary disciplinary Rehabilitation TeamRehabilitation Team

Social Welfare Social Welfare DepartmentDepartment

Non Non Government Government Organization Organization

Education Department Education Department BureauBureau

PaediatricPaediatric Rehabilitation Services in Rehabilitation Services in Hong KongHong Kong Preventive MeasurePreventive Measure

AnteAnte--natal Care (early detection of natal Care (early detection of abnormality, genetic study)abnormality, genetic study)

Child Health & Development SurveillanceChild Health & Development Surveillance

Child Assessment CentreChild Assessment Centre

Child Assessment Child Assessment CentreCentre

PaediatricPaediatricNeurology/Neurology/NeuroNeuro--

rehabilitation Wardrehabilitation Ward

Child Assessment CentreReferral request from other Agency Assessment Clinic

Further Assessment by Team Member

Investigation

School Placement Treatment/Training program

Case Conference / pre-admission Conference

Follow-up arrangement

No? Ready for discharge

Yes

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Social Welfare DepartmentSocial Welfare Department-- Central Central Referral SystemReferral System

Integrated Child Care Centre Integrated Child Care Centre (ICCC)(ICCC) Special Child Care Centre Special Child Care Centre (SCCC)(SCCC) Early Educational Training Centre Early Educational Training Centre (EETC)(EETC)

PrePre--school Servicesschool Services

Primary & Secondary EducationPrimary & Secondary Education Education Department Bureau Education Department Bureau ––

Special Education SectionSpecial Education Section Special SchoolSpecial School Remedial ClassRemedial Class Resource SupportResource Support

Hospital / Institutional CareHospital / Institutional CareHospital / Institutional Care

Community CareCommunity Care

Pulmonary Rehabilitation ProgramPulmonary Rehabilitation ProgramRegular periodical monitoring of pulmonary function Regular periodical monitoring of pulmonary function

for patients with for patients with neuroneuro--muscular diseasemuscular disease

Sleep study Sleep study SpO2 monitoring, LFT, Blood GasSpO2 monitoring, LFT, Blood GasArrangement of equipments if ventilator support Arrangement of equipments if ventilator support is initiated as well as patient / parent trainingis initiated as well as patient / parent trainingVentilator (Ventilator (BiPAPBiPAP / CPAP) titration/ CPAP) titrationSupport for chest maintenanceSupport for chest maintenance

Manage patients with multiple disabilities / Manage patients with multiple disabilities / high dependency level / complex medical & high dependency level / complex medical & rehabilitative needsrehabilitative needs

Family centered approachFamily centered approachFacilitate parent as equal partners in the Facilitate parent as equal partners in the caring and managing of childrencaring and managing of children

Intermediate Care / Step Down Care Intermediate Care / Step Down Care with Rehabilitation Programwith Rehabilitation Program

Rehabilitation TeamRehabilitation Team Framework of Rehabilitation NursingFramework of Rehabilitation Nursing

Education Education

CoCo--ordinationordination

TherapeuticTherapeuticPracticePractice

AdvocacyAdvocacy

Advice / Advice / CounselingCounseling

Empowerment Empowerment

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Common Disability Common Disability ––Feeding ProblemFeeding Problem

Hindrance to FeedingHindrance to FeedingInability to sit independently in an Inability to sit independently in an upright positionupright position

Poor head controlPoor head controlPoor trunk controlPoor trunk controlInvoluntary movements Involuntary movements

Hindrance to FeedingHindrance to FeedingAn exaggeration of normal feeding An exaggeration of normal feeding skillskill

Tonic bite reflexTonic bite reflexTongue retractionTongue retractionHyperactive gag reflexHyperactive gag reflex

Hindrance to FeedingHindrance to FeedingPoor coordination of the Jaw, Lip, and Poor coordination of the Jaw, Lip, and TongueTongue

Poor lip closure Poor lip closure Poorly controlled tongue movementPoorly controlled tongue movementPoor chewing patternPoor chewing pattern

Hindrance to FeedingHindrance to FeedingA delay in the normal progression of A delay in the normal progression of feeding skillsfeeding skills

Inability to grasp food or to finger Inability to grasp food or to finger feedfeedDifficulty in cup drinkingDifficulty in cup drinkingDifficulty using a spoonDifficulty using a spoon

OralOral--Motor Rehabilitation Motor Rehabilitation ProgramProgram

Video Fluoroscopy Swallowing Study Video Fluoroscopy Swallowing Study (VFSS)(VFSS)24 Hours PH Study24 Hours PH Study

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OralOral--Motor Rehabilitation Motor Rehabilitation ProgramProgram

Feeding trainingFeeding training

Monitor of growth & nutritional status Monitor of growth & nutritional status Monitor signs of aspirationMonitor signs of aspirationEnsure safe feeding regimeEnsure safe feeding regimeAdjust food consistencyAdjust food consistencyRyleRyle’’ss tube feeding / tube feeding / GastrostomyGastrostomy carecare

Common Disability Common Disability --EpilepsyEpilepsy

Epilepsy Rehabilitation ProgramEpilepsy Rehabilitation Program

••

VEEG monitoring VEEG monitoring Seizure monitoring & Drug titrationSeizure monitoring & Drug titrationPost epilepsy surgery rehabilitationPost epilepsy surgery rehabilitationParent educationParent education

Emergency managementEmergency managementKetogenicKetogenic dietdietDrug regimeDrug regime

Upper airway abnormalities Upper airway abnormalities Craniofacial syndromeCraniofacial syndromeMucopolysaccharidosisMucopolysaccharidosisDown syndromeDown syndromeSkeletal dysplasia Skeletal dysplasia e.ge.g achondroplasiaachondroplasiaSpinal muscular atrophySpinal muscular atrophyCongenital Congenital myopathymyopathyCongenital Congenital hypoplastichypoplastic lunglung

MMeedical Conditions for dical Conditions for TracheostomyTracheostomy/ / Long term ventilator AssistedLong term ventilator Assisted

A youth, stayed few years in Intensive Care Unit..A youth, stayed few years in Intensive Care Unit..………………....Something can be doneSomething can be done……....

Children born with Muscle diseaseChildren born with Muscle disease--Dependent on wheel chair for Dependent on wheel chair for mobilitymobility--Need machine to assist breathingNeed machine to assist breathingFamily has difficulty looking afterFamily has difficulty looking after A HDU case A HDU case –– a Child hook a Child hook

on Ventilator since 3 on Ventilator since 3 months oldmonths old……

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InIn--patient Step Down Care for patient Step Down Care for Assisted Long Term VentilationAssisted Long Term Ventilation

ICU, HDUICU, HDU

Rehab Ward - Ventilator Care Program

HomeHome

SchoolSchoolSociety

Family orientedFamily orientedPatient / care taker empowerPatient / care taker empower

Can They Allow Home Care ?Can They Allow Home Care ?

Hindrance to Discharge/Community Hindrance to Discharge/Community IntegrationIntegration

Incompetent parents Incompetent parents Problem in recruitment of trained Problem in recruitment of trained carerscarers

ParentParent’’s acceptance of shoulder the power s acceptance of shoulder the power shifting shifting

Social implicationSocial implicationOffended by reactions faced Offended by reactions faced Living isolatedLiving isolated

Environmental factorsEnvironmental factors

Hindrance to Hindrance to Discharge/Community IntegrationDischarge/Community Integration

Confronting parental responsibilityConfronting parental responsibilityImpact on family relationshipImpact on family relationship-- Need devoted extraordinary care and attention Need devoted extraordinary care and attention

to childto child’’s need s need -- SiblingSibling’’s resentment towards of being neglecteds resentment towards of being neglectedSingle parentsSingle parentsFamily stressFamily stress

-- Living with daily threat of deathLiving with daily threat of death-- Worry of childWorry of child’’s transition to adult lifes transition to adult life

Hindrance to Hindrance to Discharge/Community IntegrationDischarge/Community Integration

Pave the Road HomePave the Road Home

Most important considerationMost important consideration

When to startWhen to start

How to startHow to start

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When to StartWhen to Start

Medical condition stableMedical condition stable

Psychological preparation for Psychological preparation for parentsparents

Allow times for parents to Allow times for parents to digest the rehabilitation plandigest the rehabilitation plan

Identification of Identification of carerscarersShared decision makingShared decision makingParental empowermentParental empowermentOpen communicationOpen communication

How to StartHow to Start

Pave the Road HomePave the Road HomePrePre--transfer screeningtransfer screening

Build up rapportBuild up rapportAssess complexity patientAssess complexity patient’’s statuss statusMatch patientMatch patient’’s need with available s need with available resources resources Understand and communicate Understand and communicate both expectations both expectations

-- Resource & manpower in care is explainedResource & manpower in care is explained-- Treatment available at different stage Treatment available at different stage

is made knownis made known-- Stages of pulmonary decline should be explainedStages of pulmonary decline should be explained-- Formulate rehabilitation planFormulate rehabilitation plan

PrePre--discharge planningdischarge planning

Initiate the rehabilitation and Initiate the rehabilitation and educational program for educational program for carerscarerswith set time frame with set time frame Periodical progress meeting Periodical progress meeting

with parent / with parent / carercarerHome visit & home leave planHome visit & home leave plan

Pave the Road HomePave the Road Home

Environmental Adaptation & Home Environmental Adaptation & Home TrainingTraining

Identify the environmental Identify the environmental barriers of living environmentbarriers of living environmentIntegrate child into society & Integrate child into society & discharge home safelydischarge home safely

Pave the Road HomePave the Road Home

A Case StudyA Case Study

SMA Child discharged home SMA Child discharged home

with invasive ventilator supportwith invasive ventilator support

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Rehabil itation Program and

Discharge Plan for SMA Child

w i th Invas i ve Vent i l a t i o n

Identification of Care TakerIdentification of Care Taker

@ Mother@ Maid @ Father

Communication & Collaboration Communication & Collaboration

•• Formulate the master training Formulate the master training program is very important and with program is very important and with the time framethe time frame

•• Periodical case conference is needed Periodical case conference is needed so that the team members and the so that the team members and the parents had mutual agreement on the parents had mutual agreement on the discharge plandischarge plan

Speech therapistSpeech therapist

- Use of speaking valve Use of speaking valve -- Communication Communication -- OroOro--motor functionmotor function

PhysiotherapistPhysiotherapist

– Chest maintenanceChest maintenance–– Suction techniquesSuction techniques–– Care of suction machineCare of suction machine–– Limb exerciseLimb exercise

Occupational therapistOccupational therapist

-- TransferTransfer-- Wheelchair setting with ventilator Wheelchair setting with ventilator

& external battery& external battery-- Home modificationHome modification

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Medical social workerMedical social worker

- Funding applicationFunding application-- Financial assessment Financial assessment -- ReRe--housing housing -- Solve the family conflictSolve the family conflict

Clinical psychologistClinical psychologist

- Psychological preparation Psychological preparation -- Solve some family conflictSolve some family conflict

NurseNurse

-- GastrostomyGastrostomy care care -- TracheostomyTracheostomy carecare-- Ventilator care Ventilator care -- Use of manual resuscitatorUse of manual resuscitator-- Prepare patient for outing / Prepare patient for outing /

home leavehome leave-- Solve familySolve family’’s conflicts conflict

The Go BagThe Go Bag

-- For emergencyFor emergency* Spare same size & down size* Spare same size & down size

tracheostomytracheostomy tubestubes* Tracheal dilator* Tracheal dilator* Suction tubes* Suction tubes* Resuscitator* Resuscitator

Outing StrategyOuting Strategy-- ParentParent’’s education program completed & passeds education program completed & passed-- Patient outing with parentsPatient outing with parents

* with nurse escort for few times* with nurse escort for few times* without nurse * without nurse

-- Patient outing Patient outing * within hospital compound* within hospital compound* outside hospital area* outside hospital area

Step Down ApproachStep Down Approach

- ParentParent’’s skills and confidence build up s skills and confidence build up in escorting the outingin escorting the outing

-- Try day home leaveTry day home leave-- Home visit by team membersHome visit by team members-- Home modification will be proceed Home modification will be proceed -- Plan for overnight home leavePlan for overnight home leave

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Preparation for Overnight Home LeavePreparation for Overnight Home Leave

-- Concrete daily schedule need to offer Concrete daily schedule need to offer to care takerto care taker

-- Back up machine if the child had no Back up machine if the child had no unplug timeunplug time

-- Letter to the A&E department in case Letter to the A&E department in case of crisisof crisis

Facilitate Discharge PlanFacilitate Discharge Plan

- Arrange mother to stay overnight in Arrange mother to stay overnight in mother and child room to facilitate mother and child room to facilitate overnight home leaveovernight home leave

-- Assess motherAssess mother’’s skill s skill -- Solve problems arising during the Solve problems arising during the

staystay

Work on Equipment ListWork on Equipment List

- Essential equipment listEssential equipment list-- For funding application For funding application -- Or rent to own schemeOr rent to own scheme

Other PreparationOther Preparation

-- Estimate monthly Estimate monthly consumption consumption

-- Purchasing list of the Purchasing list of the essential consumable items essential consumable items

Other Back Up ServicesOther Back Up Services

-- CNS serviceCNS service* Monitor of progress* Monitor of progress* Psychological support* Psychological support

-- 24 hours hot line enquiry from ward24 hours hot line enquiry from ward-- Respite careRespite care

Discharged Home

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HospitalHospital CommunityCommunity –– Home, Social Activity, Home, Social Activity, Leisure, SchooLeisure, Schooll

Community Support Networking in HK Community Support Networking in HK

Education Department BureauEducation Department BureauSocial Welfare DepartmentSocial Welfare DepartmentCommunity nursingCommunity nursingHousing Housing TransportTransportEmergency attentionEmergency attentionEmployment Employment

Our WishesOur Wishes………………....

Children with chronic Children with chronic disabilities be able to disabilities be able to grow up in a supportive & grow up in a supportive & loving environmentloving environmentThey are able to grasp They are able to grasp

their strength their strength and abilitiesand abilitiesContributing to the society Contributing to the society

and be part ofand be part ofthe communitythe community