“How do I need to be in order to be with you?” – Building partnerships that

enrich livesDrSheridanForster

A map

• Whoarepeoplewithprofoundintellectualandmultipledisabilities&whatisinteractionwiththem?

• Whatdoesthismeantoyouandme?• Whatdoweneedtodonow?

Bear with me…

Let’s walk into a room

• Walkintotheroom

• Whatdoyouthink?

• Whatdoyoudo?

• Doyouapproachtheperson?

• Doyoudecidetotrytointeractwiththeperson?

• Andthepersondoesn’tappeartorespond…

• Whatdoyoudo?

• Doyoutouchtheirhand?

• Doyoumaketheircooingsoundandlookfortheirresponse?

• Apersonwhomightbetheirstaffmemberwalksbackintotheroom

• Whatdotheydo?

• Whatdoyoufeel?

• Whatdoyoudo?

• Whydowedowhatwedo?

• Haveyoueverdonesomethinglikethis?

• Whywould“thecommunity”dowhattheydo?

• Howdowebuildpartnershipsifthisisthesortoffoundationthatexists?

Each week in the hydro pool…

• Nowasapatient,Iexperiencethiseachweek:• DoIapproach?• DoIengage?• DoIchangewhatIdo?• DoIneedpermissionfromthestaff?• WhatdotheythinkofwhatI’mdoing?• AmIapseudoclinicianora“memberofthecommunity”?• Whataretheyotherpeopleinthepoolthinking?• Wouldthischangewhattheydo?

Who are people with Profound Intellectual & Multiple Disabilities?

(PIMD)• “ChildrenandadultswithPMLDhavemorethanone

disability,themostsignificantofwhichisaprofoundintellectualdisability.Theseindividualsallhavegreatdifficultycommunicating,oftenrequiringthosewhoknowthemwelltointerprettheirresponsesandintent.Theyfrequentlyhaveother,additionaldisablingconditionswhichmayincludeforexample:• Physicaldisabilities• Sensoryimpairments• Sensoryprocessingdifficulties• Complexhealthneeds• ‘Copingbehaviours’• Mentalhealthdifficulties”

• (Doukas,Fergusson,Fullerton,&Grace,2017)(CoreandEssentialServicesStandards,2017)

But what is profound intellectual disability?

• Profoundcognitiveimpairments• Concentration– singleline,shortterm• Memory– poorshorttermmemory– longtermmemory• Problemsolving– usingthesamewaytosolveproblems

• DSM-5– dependentforallaspectsofdailycare,commskillsquitelimited(specificityfromsevere?)

• AAID– Pervasivesupport– “mostintenselevelsofsupport”

• Itisnotavaluesstatement

How many people are we talking about?

• Emerson– PID0.05/1000(Emerson,2009)• Bray– PID0.08/1000(Bray,2003)

• Scotland(TheKeystoLife,2013)– 2,600-3,000people• NZ– ~2,400• Australia- ~12,500

PIMD Internationally

• PIMDIASSIDspecialinterestresearchgroup• ProfoundMultipleLearningDisabilities(PMLD)– UKrecognisedgroupfor

manyyears• MencapPMLDpracticeleaders• Universitycourses(Birmingham andManchester)• PAMIS advocacyandWhiteTopscentre• ChangingPlacesCampaign(alsoseeChangingPlacesAustralia)• PMLDLinkmagazine• RaisingOurSights– Mansell andvideos• Supportingpeoplewithprofoundandmultiplelearningdisabilities– Core&

essentialservicestandards• InclusiveCommunication- RCLST

• Australia– somerecognitionbypractitionersandresearchers,someinformalsupportgroupslookingatspecificissuesforpeoplewithSPID

• Youcannotlobbyforagroupthatyoucannotname…(Forster,2010)

PIMD in research

• Intellectualdisabilityasasinglegroup• Severeandprofoundintellectualdisabilityasasinglegroup

• SPID(problemwhengroupsdiffersignificantly(Forster,Gray,Taffe,Einfeld,&Tonge,2011))

• DM-ID2examinesdiagnosisaccordingtomild-modandsev-prof

• Poorgroupidentification• Age• Intervention– e.g.,Rett syndrome

• SteadyflowofresearchfromNetherlands,Belgium,Germany,UK,andAustralia

What is interaction with people with PIMD?

• Isittalkingtothepersonlikeyoudoanyoneelse?• Isitusingpicturesforeverytimeyoutalktotheperson?• Isitaboutthenumberofwordsweuseandthey

understand?• IsitunachievableforpeoplewithPIMD– theydon’t

communicate?• Isitjustsingleexpressionsoflikeanddislike?• Isityoutellingthemwhat’shappening?• Isitabeliefthattheyunderstandeverythingthat’sbeing

saidtothem- theyarejustlockedintotheirbody?• Isitsomethingquitedifferent?

Used with permission at the conference only

• Removedforpublicdistribution• ContainedvideorecordingofSheridaninteractingwithamanwithmultipledisabilities.Videoshowsinteractionthroughtouch,movement,sounds,proximity,proposingandacceptingdifferentmovementsandplay

When I first started working…

• CommunicationforpeoplewithPIMDwas:• Personalcommunicationdictionary• Touchcues• Achatbook• (Usingaaidedlanguagedisplay…)• Objectsymbolprogram

• But,Ireturnedtoitsorigins• 1980sCRSvanDirk(McLarty,1997)

• Attachment,security,co-activemovement• ThusbeganmyeyestowardsWesternEuropeanDeafblindapproaches

Intensive Interaction: Fundamentals of Communication

• Enjoying beingwithanotherperson• Developing theabilitytoattendtothatperson• Concentration andattentionspan• Learningtodosequencesofactivitywithaperson• Taking turnsinexchangesofbehaviour• Sharingpersonalspace• Usingandunderstandingeyecontacts• Usingandunderstandingfacialexpressions• Usingandunderstandingphysicalcontacts• Usingandunderstandingothernon-verbal

communications• Vocalising andusingvocalisations meaningfully(incl

speech)• Learningtoregulateandcontrolarousallevels• Lots andlotsofemotionalelements

• (Hewett&Nind,1998;Nind&Hewett,1994,2001,2005)

Disability Support Workers

• Phenomenological approach• 3disabilitysupportworkers,semi-structuredinterviewdiscussing

• whatitwaslikeinteractingwithDaphena• howtheyhadlearnttocommunicatewithher• whatwasusefulornotusefulinlearningtocommunicate• howtheirworkplacepolicyandcommonpracticesinfluencedinteractingwith

• Themes:• Learningthrough experience• Ageappropriateness?• Anemotionalrelationship• Communciation roles• Believinginunderstanding• Interactionincompetition• Ahidden culture ofcommunication

• (Forster&Iacono,2008)

Affect attunement

• Theperformanceofbehavioursthatexpressthequalityoffeelingofsharedaffectstatewithoutimitatingtheexactbehaviouralexpressionoftheinnerstate(Stern,1985)• Behaviouralmodalitysameordifferent• Clearaffectiveemphasismustbepresent(Jonsson &Clinton,

2006;Jonsson etal.,2001)

• Enablesafocusonallaffects– notjustlike

Affect attunement by DSWs

• ThemajorityoftheDSWsusedaffectattunement• Theattunedresponseusuallymatchedtheintensityofthebehaviourof

theadultwithPIMD• Theincidentswerequick,averaging2.3seconds• While thepersonwithPIMDusuallyusedposture,facialexpressionand

vocalbehaviours astheelicitingbehaviour,theDSWsusuallyrespondedwithspeechaccompaniedbypostureandfacialexpression

• ThebehaviourusedbytheadultwithPIMDwasfrequentlyamotororattentionsignalling behaviour

• Implications: Thebehaviours whichDSWsattuneareoftenidiosyncraticandfleeting.However,thesebriefmomentsofconnectionmaybeveryimportanttothequalityofinteractionandfeelingsofconnection.

• (Forster&Iacono,2014)

Hanging Out Program

• GoingintoadayserviceandChrisalwaysbeingalone

• InterviewingsupportworkersaboutinteractingwithpeoplewithPIMD• youhavethenicetimewhenthe

workisfinished• Paradigmshift

• Nottofocusontheskillsofinteraction,buttofocusonthecultureandthepermissiontointeractandcelebrateinteractions

• (Forster,2008)

HOP: An attitude and approach

• Approach• Tospend10minuteswithapersongivingthemtotalattentionintheinteraction• Tobrieflywritedownwhathappenedintheinteraction

• Attitude• Allpeoplebenefitfrominteractions• Allpeoplewanttoconnectwithanotherperson—butthisishardforsomepeople• Enjoyingthecompanyofanotherpersonisoneofthemostfundamental

communicationskillsthatneedstobesupported• Partofourroleinsupportingpeoplewithmultipledisabilitiesisengagingwith

them• Engagementmustbemeaningfultothepersonwithadisabilityandtheinteraction

partner• Ifthepersoncannotunderstandthe“language”ofthesupportperson,thenthe

supportpersonmustadapttheirlanguage.Itshouldmatchthelanguageofthepersonwithadisabilityandwhatismeaningfultothem

• Communicatingwithpeoplewithmultipledisabilitiesiseveryone’sjob,includingmanagers,allstaff,andevenotherserviceusers!

Hostyn and Maes (Hostyn, Daelman, Janssen, & Maes, 2010; Hostyn & Maes, 2009)(2009) – Review

interaction between persons with PIMD

Sensitiveresponsivenessthewaypartnersperceiveeachothersignalsaccuratelyandcorrespondinglyrespondtoeachother

Joint attentionthesharingofafocusbetweentwopartners

Co-regulationtherelationshipbetweenthebehavioursoftwopartners,theinteractionsynchrony,themutualcoordination,andthemouldingofcommunicationinflexibleways

Emotionalcomponentmutualfeelingsofcontentment,appreciationandjoy;sympathy,warmth,andclosenessoranemotionalbond

Video Interaction Guidance

”Accentuatingthepositive”Understandingwhatworksinadyad,andhowtodoitmore

Congenital deafblindness

• Series:2006.Communicationandcongenitaldeafblindness.I-4.St.Michielsgestel,TheNetherlands:VCDBF/Viataal.

• Buildingnarrativesacrossmovesininteraction

• Theimpressionoftheexpression

Engagement and participation -Alant

• 2017inabookaboutaugmentativeandandalternativecommunicationraisedaconcernaboutthetypeofcommunicationthatisbeingtaught

• Communicationisaboutmeaningmakingwithanotherperson

• Participation• Doingwith

• Engagement• awarenessofselfandother-

intersubjectivity• Beingwith

Special Books for Special Kids –Chris & Marianna – The Missing

Ingredienthttps://www.facebook.com/specialbooksbyspecialkids/videos/941087115993269/

Without great quality interactions with people with PIMD…

• Thepersonhasareducedqualityoflife(Petry,Maes,&Vlaskamp,2009)

• Thepersoncannotparticipateinsupporteddecisionmaking(Watson,Wilson,&Hagiliassis,2013,2017)

• Theperson’sopportunitiesforrelationshipsarereduced(Johnson,Douglas,Bigby,&Iacono,2010,2012a,2012b)

• Thepersonwillhavegreaterhealthproblems

What does interaction with people with PIMD mean to you?

• Researcher• Clinician• Servicemanager• Disabilitysupportprofessional• Familymember• Apersonwithanintellectualdisability• Arandompersoninthecommunity

What we need to do now to build these partnerships?

• Ambassadorsforengagement• Interpreters• Modelsofengagement• Scientist/researchers• Philosophersandethicists

Ambassadors

• 1Anaccrediteddiplomatsentbyastateasitspermanentrepresentativeinaforeigncountry.

• 1.1Arepresentativeorpromoterofaspecifiedactivity.‘heisagoodambassadorfortheindustry’

• OriginLateMiddleEnglish:fromFrenchambassadeur,fromItalianambasciator,basedonLatinambactus ‘servant’.

Ambassador through report writing

• Showingthedialoguethatcanoccurthroughphotos,videos,descriptions

• Drawingrecommendationsfrominteractions

• Consideringwhetherourcurrentdominantmodelofcommunicativeintentionalityservestoenhancedialogicality orundermineit

Time Still shot Observation Analysis

06

We began the interaction with me sitting very close to X.

In approaching him, I looked at whether he would respond (by looking or listening) at 2m, 1m, and given the limited response I sat within his contact with my knee touching his and face close

07

X tapped his foot.

I tap his knee trying to show him that I noticed that he tapped his foot (I am using his focus to try to get his interest in me)

08

X looks at me briefly.

I’ve noted that X’s responses are very small. I see this as a good outcome – showing interest in another person is an important socio-communicative skill

Deeply understand our current interactions

• Deeplyunderstanding• 1st personknowledge• 2nd personknowledge• 3rd personknowledge• (Reddy,2008)

• Richdescriptionsofinteractionshouldbepartofallcommunicationasssessments

• Communicationtranscripts• Subtilting interactions

https://www.youtube.com/watch?v=k88BSQJUGaM

RCSLT – Five Communication Standards

1. Thereisadetaileddescriptionofhowbesttocommunicatewith individuals.

2. Servicesdemonstratehowtheysupportindividualswithcommunicationneedstobeinvolvedwithdecisionsabouttheircareandtheirservices.

3. Staffvalueandusecompetentlythebestapproachestocommunicationwitheachindividualtheysupport.

4. Servicescreateopportunities,relationshipsandenvironmentsthatmakeindividualswanttocommunicate.

5. Individualsaresupportedtounderstandandexpresstheirneedsinrelationtotheirhealthandwellbeing.

Interpreters

• Interpreterstohelpthepersonwithadisabilityunderstandasbestpossible

• Interpreterstohelpthe“communitymember”understandtheperson• Considerthefeelingsofthe

person• Positivelyguidethem• Beawareofsignalswhich

mightdiscourage

• Socialinterpreters

Dreenagh Lyle– 6-7PMLD-LINK2018ReflectingontheCoreandEssentialStandardsIamstronglycommittedtosupportingourteam.Inmyprofessionalworkithasalwaysconcernedmethatthereissuchalackofreflectivepracticegenerallyinthesocialcaresector.Workersfeeltheyhavetocopebutareoftennotsupportedtosharetheirthoughts.Spendingalldaywithsomeonewhousestheword‘salad’asasensorytoolcouldbefulfillingandrewarding,butcouldequallybeextremelystressful.Icamehomeonedaytobetold,‘she’sbeensaying“Iwanttokillyou”allday…Butshedoesn’tmeanit…doesshe?’Thewaythisworkerasked,Icouldsense,atsomelevel,shereallywasn’tsure.Tenminutesspentdiscussingthisallaysconcernsandhelpstheworkerfeelconfidentintheirsupportstyle.Thefeelempoweredtospeakupinsteadofjust‘getonwithit’.

Scientists / researchers

• Beinginformedbycurrentresearch• Disabilityresearch• Infantresearch

• Addingourownstoriestoresearch• Reflectivepractitioners

Models of engagement

• Weneedtodemonstratehighqualityinteraction

Philosophers/ethicists

• Whatistherightthingtodohere?• Forthegoodofthepersonorthegoodofsociety

• Compromisingapersonsconnectiontomakethings“looknormal”

• Challengeconceptslikeageappropriatenesswhichmayoperateasbarriersinindividualslives(Forster,2010)

• Seriouslyexaminetoneedforcloserelationshipswithstaffandothers

• ExaminingplaceofpeoplewithPIMDincontextof“presumecompetence”andableism

• ”Firstperson”writing• Dangersofmisrepresentation

Let’s return to that room…

The Procter Sisters

• https://youtu.be/NKzaUuixIQ8?t=12m30s

1min

References 1

• Doukas,T.,Fergusson,A.,Fullerton,M.,&Grace,J.(2017).Supportingpeoplewithprofoundandmultiplelearningdisabilities:Core&essentialservicestandards.Retrievedfromhttp://www.pmldlink.org.uk/wp-content/uploads/2017/11/Standards-PMLD-h-web.pdf

• Emerson,E.(2009).EstimatingfuturenumbersofadultswithprofoundmultiplelearningdisabilitiesinEngland.TizardLearningDisabilityReview,14(4),49-55.https://doi.org/10.1108/13595474200900040

• Forster,S.(2008).HOP:HangingOutProgram:Interactionforpeopleatriskofisolation.Oakleigh,Australia:Author.

• Forster,S.(2010).Age-appropriateness:Enablerorbarriertoagoodlifeforpeoplewithprofoundintellectualandmultipledisabilities?JournalofIntellectual&DevelopmentalDisability,35(2),129-131.https://doi.org/10.3109/13668251003694606

• Forster,S.(2010).Unnamedinsilence.Link,19, 32-33.• Forster,S.(2016).Doeswritinginfirstpersonputthepersonfirst.PMLDlink,28, 20-21.• Forster,S.L.,&Iacono,T.(2008).Disabilitysupportworkers'experienceofinteractionwithapersonwith

profoundintellectualdisability.JournalofIntellectual&DevelopmentalDisability,33(2),137-147.https://doi.org/10.1080/13668250802094216

• Forster,S.L.,&Iacono,T.(2014).Thenatureofaffectattunement usedbydisabilitysupportworkersinteractingwithadultswithprofoundintellectualandmultipledisabilities.JournalofIntellectualDisabilityResearch,58(12),1105-1120.https://doi.org/10.1111/jir.12103

• Forster,S.,Gray,K.M.,Taffe,J.,Einfeld,S.L.,&Tonge,B.J.(2011).Behaviouralandemotionalproblemsinpeoplewithsevereandprofoundintellectualdisability.JournalofIntellectualDisabilityResearch,55(2),190-198.https://doi.org/10.1111/j.1365-2788.2010.01373.x

• Hewett,D.,&Nind,M.(Eds.).(1998).Interactioninaction:ReflectionsontheuseofIntensiveInteraction.London,England:DavidFulton.

• Johnson,H.,Douglas,J.,Bigby,C.,&Iacono,T.(2010).Thepearlinthemiddle:Acasestudyofsocialinteractionsinanindividualwithasevereintellectualdisability.JournalofIntellectual&DevelopmentalDisability,35(3),175-186.https://doi.org/10.3109/13668250.2010.501026

References 2

• Johnson,H.,Douglas,J.,Bigby,C.,&Iacono,T.(2012a).Amodelofprocessesthatunderpinpositiverelationshipsforadultswithsevereintellectualdisability.JournalofIntellectualandDevelopmentalDisability,37(4),324-336.https://doi.org/10.3109/13668250.2012.732221

• Johnson,H.,Douglas,J.,Bigby,C.,&Iacono,T.(2012b).Socialinteractionwithadultswithsevereintellectualdisability:Havingfunandhangingout.JournalofAppliedResearchinIntellectualDisabilities,25(4),329-341.https://doi.org/10.1111/j.1468-3148.2011.00669.x

• Jonsson,C.-O.,&Clinton,D.(2006).Whatdomothersattunetoduringinteractionswiththeirinfants?InfantandChildDevelopment,15(4),387-402.https://doi.org/10.1002/icd.466

• Jonsson,C.-O.,Clinton,D.,Fahrman,M.,Mazzaglia,G.,Novak,S.,&Sorhus,K.(2001).Howdomotherssignalsharedfeelingstatestotheirinfants?Aninvestigationofaffectattunement andimitationduringthefirstyearoflife.Scandinavian JournalofPsychology,42(4),377-381.https://doi.org/10.1111/1467-9450.00249

• McLarty,M.(1997).Puttingobjectsofreferenceincontext.EuropeanJournalofSpecialNeedsEducation,12(1),12-20.https://doi.org/10.1080/0885625970120102

• Nind,M.,&Hewett,D.(1994).Accesstocommunication:DevelopingthebasicsofcommunicationwithpeoplewithseverelearningdifficultiesthroughIntensiveInteraction.London,England:DavidFulton.

• Nind,M.,&Hewett,D.(2001).ApracticalguidetoIntensiveInteraction.Kidderminster,England:BritishInstituteofLearningDisabilities.

• Nind,M.,&Hewett,D.(2005).Accesstocommunication:Developingbasiccommunicationwithpeoplewithseverelearningdifficulties (2ed.).London,England:DavidFulton.

• Petry,K.,Maes,B.,&Vlaskamp,C.(2009).Psychometricevaluationofaquestionnairetomeasurethequalityoflifeofpeoplewithprofoundmultipledisabilities(QOL-PMD).ResearchinDevelopmentalDisabilities,30(6),1326-1336.https://doi.org/10.1016/j.ridd.2009.05.009

• Reddy,V.(2008).Howinfantsknowminds.Cambridge,MA:HarvardUniversityPress.• Stern,D.N.(1985).Theinterpersonalworldoftheinfant:Aviewfrompsychoanalysisanddevelopmentalpsychology.New

York,NY:BasicBooks.• Watson,J.,Wilson,E.,&Hagiliassis,N.(2017).Supportingendoflifedecisionmaking:Casestudiesofrelationalclosenessin

supporteddecisionmakingforpeoplewithsevereorprofoundintellectualdisability.JournalofAppliedResearchinIntellectualDisabilities,30(6),1022-1034.https://doi.org/10.1111/jar.12393

• Watson,J.,Wilson,E.,&Hagliassis,N.(2013).Participationindecisionmakingforpersonswithsevere–profoundintellectualdisabilities:Whatcanitlooklike?JournalofPolicyandPracticeinIntellectualDisabilities,10.https://doi.org/10.1111/jppi.12029