Six Steps of Autism Care - Belfast Health and Social Care Trust

Six Stepsof Autism CareA Parent/Carer Summary to the Care Pathway forChildren and Young People in Northern IrelandRegional Autistic SpectrumDisorder Network (RASDN)

BackgroundThis leafl et has been created to provide parents/carerswith information about the new regional ‘Six Steps ofAutism Care’ Pathway for children and young people inNorthern Ireland.The following information guides you through the stagesof raising your initial concerns, through to a professionaltelling you that your child or young person may haveAutistic Spectrum Disorder (ASD). This journey is nowknown as the ‘Six Steps of Autism Care’.Why is a care pathway important?This leafl et tells you about the agreed journey your child/young person, and you, will take through the integratedassessment, diagnosis and intervention process.It will give you information about each step in the processabout who will see your child/young person; which testswill take place; tell you whether your child/young personhas ASD, or not, and the follow up support that will bemade available to your child/young person and family.

Getting startedAs a parent/carer you may have concerns about your childor young person’s development or whether he/she mayhave autism.Once your GP, health visitor or other professional, withwhom you are in contact, is sure that your child/youngperson is experiencing diffi culties, he/she will refer him/herfor an assessment.To start the referral process the professional who willmake the referral will complete an Autism Service Team(AST) Referral Form which will include informationobtained from you the parent/carer.

The fl ow diagram below outlines the journey along the‘Six Steps of Autism Care’ pathway.Making a Referralto Autism ServicesStandardisedReferral FormSingle Point ofAccess for allReferralsPreparing for AssessmentFamily InformationLeaflet/Session ProvidedWithin Four Weeks of ReferralReferral ScreenedWithin Five DaysReferral DoesNot Meet ServiceCriteriaFurther Assessment(s)required in accordancewith the Child/Young Person’ sDevelopmental StageStep One: First AppointmentDirected ConversationRelationship Building WithinMaximum Waiting Time of 13 WeeksChild/Young Personand Family Redirectedto Appropriate ServiceStep Two:Integrated Multi-disciplinaryTeam AssessmentNot Autistic SpectrumDisorder (ASD)Step Three: Integrated Multi-disciplinaryTeam FormulationStep Four: Family Feedback and Care PlanningEarly Intervention ProgrammeStep Five:Integrated Family Intervention andSupport Services Delivered OverPre-Planned SessionsEducational Based InterventionEnvironmental AdaptionsFamily Support ProgrammeLanguage and Communication StrategiesMental Health and Well-beingPerson-Centred PlanningStep Six:Child and Family Care Plan Reviewat Regular IntervalsPharmacological Care (where appropriate)Psychological/Bahavioural Support ProgrammeSensory Processing StrategiesTransitions

The Pathway – step by stepStep One: Once a referral is made by an appropriateprofessional to the specialist AST in your local Healthand Social Care Trust, you will be contacted by amember of the AST within four weeks with details aboutyour appointment, if the referral has been acceptedfor assessment. At this time the AST will also seekinformation from any services your child/young person iscurrently receiving.If the referral has not been accepted the referral formwill be returned to the referring professional with anexplanation/advice about next steps.Step Two: One or more meetings will take place tocarry out some tests with your child/young person. Thisis called the assessment process and this can happenat home, at school, or at the Autism Clinic. This willcommence within 13 weeks from the referral made to theAST.Steps Three and Four: Once the ASD assessment hastaken place, you will either be informed on that occasionor at a later meeting, on an agreed date, of the outcomesof the assessment (tests) and be advised if your child/young person has ASD or not, and what will happen next.Step Five: Staff will talk to you about the treatments/interventions to be put in place for your child/youngperson. These treatments/interventions are known asthe tailored Intervention Care Plan and will be based on

your child/young person’s assessed needs. They willcommence within 13 weeks of getting your child/youngperson’s diagnosis. Ongoing family support will also bemade available.Step Six: When the initial agreed treatment/interventionshave been completed, you will be contacted by the AST,to come for a review appointment to check on your child/young person’s progress. You will be advised of a namedworker to support you and you may seek advice at anytime. Long-term planning and review will be put in place,especially for transition points.Who does the assessment? (Step Two)The team involved in making the ASD diagnosis will comefrom a range of professional backgrounds, comprising atleast two members from the following list:• paediatrician;• child psychiatrist;• speech and language therapist;• occupational therapist;• clinical psychologist;• specialist health visitor;• mental health practitioner;• social worker;• specialist nurse;• educational psychologist;• specialist teacher/advisor;• other trained professionals with relevant knowledge andexpertise.

All professionals who carry out assessments for an ASDdiagnosis will have expertise acquired through ASDspecifi c training and related conditions, professionaldevelopment, supervision and work experience.What happens after diagnosis? (Steps Four andFive)After diagnosis, you will be given a written copy ofthe assessment and diagnosis outcome. This will beexplained in such a way that you know what is being saidand have a clear understanding of the agreed tailoredIntervention Care Plan. This is developed in partnershipwith you, for your child/young personand your family. You will know thefollowing:-• who will be working withyour child/young person and you;• which treatments/interventionsthey will be offering and why;• what support will be available toyou, information about agencieswhich can offer help, andthe contact details of yournamed link person who will respondto any queries during or afterthis initial treatment/interventionprocess has been completed.

How can the ‘Six Steps of Autism Care’ helpyou and your family?The new regional ASD Care Pathway should mean thatall families using local Autism Services experience coordinatedand responsive support. It will ensure youget the right information, at the right time, from the rightpeople. It will help you to understand the roles of theindividuals who will carry out the assessments, so youknow how and why the fi nal decision has been made.Useful information / contactsContact the AST/ASD Co-ordinator at your localHealth and Social Care Trust for a list of local ASDservices, information on voluntary organisations andother useful resources.To view the full version of the ‘Six Steps of AutismCare’ document log on to the Health and Social CareBoard’s website: www.hscboard.hscni.net.Alternative formatsThis leafl et can also be made available in alternativeformats: large print, computer disk, Braille, audio tape ortranslation for anyone not fl uent in English. Please contactthe Communications Offi ce at the Health and Social CareBoard www.hscboard.hscni.net.