POLICYBULLETIN2, 2013

CENTREFOR DISABILITY RESEARCHAND POLICY

TRANSITIONTORETIREMENT

Cover Artwork:

RiadMoujalli,Abstractcolours,watercolour

RiadMoujalliisanartistsupported bySunshine's

Community AccessProgramArtStudio

TRANSITIONTO RETIREMENT

POLICYBULLETIN2,2013

June2013

ISSN:2201-7488

ProfessorRogerJ.Stancliffe(CentreforDisabilityResearchand

Policy,UniversityofSydney)

ProfessorChristineBigby(ResearchLeaderLivingwithDisability, LaTrobeUniversity)

ProfessorSusanBalandin(JessieHetheringtonCentrefor

EducationalResearch,VictoriaUniversityofWellington)

DrNathanJ.Wilson(CentreforDisabilityResearchandPolicy, UniversityofSydney)

Thisresearchwassupportedunderthe AustralianResearchCouncil’sLinkage Projectsfundingscheme(Projectnumber: LP0989241)andwiththeassistanceoftwo

industrypartners:(1)AustralianFoundationfor Disability(AFFORD),and(2)StJohnofGod Accord.Theviewsexpressedhereinarethose oftheauthorsandarenotnecessarilythose

oftheAustralianResearchCouncilorthe

industrypartners.

INTRODUCTION

Due to increasedlife expectancy,the numberof olderAustralians with a long-termdisability,such as intellectual disability,isincreasing.Morepeople withdisabilityare facing retirement.Planningfor retirementispartof the life cycle formostAustralians,butpeople withintellectual disabilitycan be reluctantto leave their familiar workenvironment, and mayfind ithard to envisage life in retirement.As well, olderpeople with aintellectual disabilitymeetsignificantbarriers to enjoying an active retirement. These include a lackof planning,fewopportunities to access mainstreamretirementactivities,absence of friendsorcompanions forsocial activities,as wellaspractical and bureaucraticdifficulties.Yet retirement planning isimportantforthisgroup of olderAustraliansasolderpeople with disabilityoften have health problems thatnecessitate themretiringyearsearlierthan the nominal retirementage of 65.

Although disability-specificservicesoffersupportto youngerpeople through school,transition to work, and work,there are fewif anyformalised and funded governmentsupportsorpolicies to assistolder workers with a disabilityto transition to retirement.

ThisPolicyBulletin describes the implementation and evaluation of theTransition to Retirement(TTR) Programthatwasexamined in a

three-yearcollaborative programof applied research involvinguniversity researchersand disabilityservice providers.TheBulletin ends with recommendationsforpolicyand practice based on ourresearch findingsand on the practical experience of delivering the program.

The TTR Programofferedolder people with disabilitythe opportunity to begin to build a retirementlifestyle byjoining a general community

groupforone daya weekinstead of

Leone

Leonehasattendedamainstreamseniors’grouponcea week forover 18 monthssofar.

Ittooksometimetofind alocal group thatmatched her interests.Membersof the group gladlyofferedtomentor her.

Shebringsher knitting tothegroup,playsbingoanddominoes and cleansup after lunch. “I likeeverything. I enjoy

everybody'scompany. Weare onebig happyfamily,”shesays. For thefirsttimeshe had friendsin thewidercommunity:it wasa newexperiencefor hertobump intofriendsfromthe seniors’group atthelocal shopsand stop tohaveachat.7

workingon thatday.Thus, the program fulfilsan importantgoal of disabilitypolicy:the social inclusionof people with disabilityin Australian communitylife.

The programinvolved:

• talkingto people with disabilityaboutretirement,

• investigatingtheir interests,

• finding anappropriate communitygroupforindividuals to join,

• seekingand then trainingmentorsfromthatgroup,and

• ensuringthe people with disabilitywere activelyinvolved so theycould contribute to the group.

The olderworkersinvolved in the TTR Programreflected the population whoworkin sheltered employmentsettings,known asAustralian DisabilityEnterprises (ADEs).Theirdisabilities were all long term,often lifelong,andincluded intellectual,physical,psychiatricand sensorydisability,as well as acquiredbraininjury.Mostwere people with intellectual disability.

In the course of the project27 people withmild tomoderate disabilityjoined communitygroups.Nearly all had limited education,and hadspentdecades insheltered employment.Mostlived in disability- specifichousing.In joininga general communitygroup theyexperienced an increasein social connectedness,learned newskills,and made new acquaintancesin the widercommunity.

THEAGEINGPOPULATION

Manypeople with a disabilityare employed in ADEs.In 2007 these programsemployed 4,510 adults with a disabilityaged50 orover,an increase of 103%since 2000.Half this workforce isforecastto be aged over50 by2050.12

Retirees in the general communityoften have grandparenting and otherresponsibilities thatkeep them connected to familyand the community,whereas manyolderpeople with intellectualdisabilitydo not have these responsibilities.Usually,theyhave limited funds to spend on social activities.Theyrarely own a carandmustrelyon public transportor transportbyservice providers.As well,a lackof friends and acquaintancesfrequentlylimits theiropportunitiesforsocial activities.Consequently,theyare often isolated,bored and lonely.

There are manygeneral communitygroups forretirees,such asseniors’ centres,men'ssheds, communitygardens,and well women'snetworks.Active participation in the communitybringsmany benefitsforseniors:enhanced qualityof life;a sense of belonging and accomplishment;increased

feelingsof physical andmental well-being;and social engagement. Yet,mostolderpeople with disability do notparticipate activelyin such groupsand so donotshare these benefits.

The challengeforpolicymakers,disabilityservice providersand mainstreamcommunitygroupsis to provide a pathwayand a supportsystemforthe increasing numberof seniorswith disabilitywhocan experience those benefits.1

BARRIERS TOANACTIVE,INCLUSIVE RETIREMENT

The disabilityservice systemisstruggling to resolvekey dilemmasaboutretirementand the provision of support forsocial participation as thosewith disabilityage. Serviceshave beenleftto make ad hocprovisionsthat are unfunded and,justasimportantly,unevaluated. Finding a solution isfurthercomplicated byAustralia having a dual systemof participation supportfor adults with disability.

Dayprogramsare funded bystate governmentsand differbetween the states,whereastheFederal GovernmentsupportsADEs.Transitioning to retirement meansnegotiating a paththatinvolvesboth state and

Federal governments.

InitialViews aboutRetirement:

I’vegotmy friends here(atwork)you knowI go homeand I go toworkthat’s enough forme…no-onethinksofretiring…

“…you sitat homeand youdon’tdo anything

Comments byfocusgroupparticipants with disability.

Our researchfound that people with disabilityworking inADEsdid notlookforward to retirement.Older people with disability,theirfamiliesand supportstaffsawretirementasirrelevantorasa risk. Nevertheless,theyunderstood thatactivityand engagement,such as theyexperiencedin their employment, wereimportant.Theparticipants in ourstudyfeared thatretirementwouldlead toboredom and loneliness.Theypreferred to go to workthan tositathome and do nothing.Theyalso worried that thefriendship provided byworkwould belostif theyretired and would notbe replaced byothersocial connections.

In the absence of anyexperience of more sociallyinclusive retirementoptions,people with disability, familymembersand disabilitystafftended to fall backon the typesof programs theyknewabout.Thus, theirstated preference wasforongoing programs thatreplicated the worksituation,namelyseparate and special retirementactivitygroupsforpeople with disability,despite thecurrentdisabilitypolicythat

promotessocial inclusion.3

THETRANSITION TO RETIREMENT EXPERIENCE

COMMUNITYGROUPS

Formostparticipants,thiswas the firsttime thattheyhad joined amainstreamcommunitygroup asan individualmember.Of the29 participants who attended a group atleastonce,2 withdrew(one due to health problems,one triedseveral groupsbutoptedto withdraw).The remaining 27 attended theirgroup weeklyforatleastthreemonths,with all but2 goingforatleastsixmonths (a 6-month success rate of

86%).Reasonsfordiscontinuing included physical ormental health problemsor,in one case,returning to work.Twentyone (72%)are continuing long term.

The participantseach attended a differentcommunityorvolunteergroup forone to sixhoursa daywith an average of 3.6 hours.All the groupshad a communal morning tea andmosthad lunch together.

The groupsincluded:

•eightdifferentmen'ssheds•a seniors’choir

•two differentcommunityplantnurseries•the CatProtectionSociety

•sixdifferentseniors’ groups•two differentcommunitykitchens

•a communitygarden•an exercise and social group

•a Lifeline charityshop•a walking andknitting group

•an aviationmuseum•a seniors’ ten pin bowlingleague,and

•alawn bowlsclub.

The diversityof these groupsdemonstrates the potential capacityof local communities to provide sociallyinclusive outletswhere olderpeople with disabilitiescan join with others who have shared interests.However,thiscapacityneeds to be harnessed to enable a person with disabilityto experience the full benefitsof communitygroup membership with supportforactive participation.

BENEFITS

Participantsexperienced significantbenefitsbymaking newsocial contactsand taking partinmore mainstreamcommunityactivities.Theyeach gained an average of fournewacquaintancesand decreased theirworkhoursasplanned.After sixmonthsof going to theirgroup,theyreported being more sociallysatisfied than matched comparison groupmembers who had continued to work. Occasionally,there wasa one-off social contactoutside the group,attending outings,running into other

members while in the local shopping centre,orbeing given a lifthome,butmostparticipantsonlyhad contactwith othermembers when attending the group.

Thestudydemonstrated thatparticipation inmainstreamcommunitygroupsisaviable option for developing a socially-inclusive retirementlifestyle forolderindividuals with a disabilityand relativelylow supportneeds.4

There were also benefits formentors,communitygroups and the broadercommunity.These included greaterawarenessof disability,readieracceptanceof people with a disability5,andincreased capacity forgroups to supportmembers with disability.People with a disabilitymadean active and positive contribution to theirgroup.In cases where the person served asa volunteer,such asbyworking in a charityshop,their voluntaryworkprovided a benefitto the broadercommunity.

MENTORS

Mostpeople with disability require some support.Thiscan come frompaid workers,fromunpaid individualssuch asfamilymembersand friends,oramixture of both.Itisnotfinanciallyfeasible to have paid one-to-one supportforindividuals with disabilityto attend communitygroups.As well,the presence of disabilitystaff can act asa barrierto natural social interactions,with groupmembersdeferring to staff ratherthan relating directlytothe person with disability.Butas the TTR Programdemonstrated,support and interaction can also be achieved through mentoring bymembersof the communitygroup,with initial training,ongoingmonitoring,as-needed supportfromthe TTR coordinator.

Akeycomponent of theTTRProgramwas the recruitmentand training of 73existingmembersof the communitygroups to provide supportormentoring to a person with a disabilitywho joined the group. Mentorrecruitmentwasmostlystraightforward oncegroupmembersstarted togetto knowthe person. Participantshadanaverage of 2.7mentors,withmanymentorspreferring to share the responsibility.

To teach the mentorshowto supportthe person with disability,mentor training and supportdrewon a combination of (1)ActiveSupport,which involvesfacilitative assistance to enable engagementin meaningful activities,and(2)Co-workerTraining.The Co-workerTrainingmodel wasadapted so that willing group members were trained as mentorsforthe person with disabilityattending the group,rather than external disabilitystaff supplying needed on-the-job supportto the person with disability.

Mentorssupported two typesof participation,socialand activity.Social participation wasan integral part of being a groupmember.Mentorsincluded the person with disabilityin morning tea conversations, and prepared themforchangesof routine.Thementorssawbeyondthe disability,recognisingthe person as an individual with a unique personalityand interests.

Participationin activitieswasbased on the principlesof Active Support,selectingactivitiesaccording to the person'sstrengthsorexisting skills. Thementorsfound that,over time and with the right amountof support,the person with disabilitybecamemore comfortable with these tasks. Forexample,a person with disabilitytaking on the role of setting the lunch tablesata seniors’ group mightneed prompting andclose supervisionfromthe mentorin orderto complete this taskin the expected way.Butwith careful design of thisactivityand practice,

thetaskbecomesmorefamiliarand mentorsupportisno

longerneeded.

Participants’ comments after6months goingto theircommunitygroup

“I’ll keep on doing itfortherestofmy life,bowling (lawn bowls).”

“Peopleareso nice...Wetalkaboutall sortsof things(seniors’social group).”

“They’remy mates...they lookafterme, they talkto me…and sometimesI help them(men’sshed).”

The outcome of supporting the social and activityparticipation of the person with disability wassocial inclusion,whatmentorscalled “fitting in”.This included the sense thatthe disabilitywasno longeran issue.

With the righttype and amountof supportfromthe TTR coordinator,communitygroupsand their members were willing andable to supportthe inclusion of a person with disability.

Mentors were fundamental to the successof the projectin achieving social inclusion.Theyenabled each person with disabilityto fullyparticipate in theircommunitygroup.5

KEY FEATURES OFTHETRANSITION TORETIREMENTMODEL

The TTR Programhas three components:(1)promoting the conceptof retirement;(2)laying the groundworkforinclusion of intending retirees with disabilityin the community; and (3)constructing the reality.

Promoting retirementwasessentiallyan information exercise to help peoplethinkaboutpossibilities,to understand retirementbetter,and to gain confidence in the program.

Laying thegroundwork in the communitymeantexploring communitygroups,and attempting to shape attitudesin the groups towards including aperson with disability.

Constructing the realityhad five stages,(i) planning,(ii)locating a group,(iii)mappinga newroutine, (iv) recruiting,training andsupportingmentors,and (v)monitoring and ongoingsupport.

Itbegan with jointlyplanningor working outthekindsof activities the participantwould enjoy,followed by locating a grouptomatchthe person’spreferencesasfaraspossible.The groupschosenmeton a weekday,atthe same time on the same dayeveryweek,to enable the participant,theircarersand

workplaceto adaptto the newroutine.Onlyone person with disabilityjoined each group.

The communitygroups were very welcoming although one all-female group did notwanta male participant. There wasalso some concern aboutrisk;somemen's shedshave equipmentthatifmisused could be dangerous,andmen worried aboutthe participant's safety.

The nextstage wasmapping a new routinewith the participant.The TTR coordinatorhelped arrange

transportforthe person toand fromthe group. Thiscould include being driven bydisabilitystaff,familyorfriends; using communitytransportif available;orlearning to travel to the group bypublic transport.If the personwith disabilityused public transport,the coordinatorprovided travel training,often a time-consuming process.

For the firstfewweeks,the coordinatorassisted the participantto settle in.Then in the recruiting,training and supporting mentorsstage,membersof the group volunteered asmentors.Theyreceived training and ongoing supportfromtheTTR coordinator.

Graeme

For Graeme,ashyman,changing hisroutineand meetingmorethanten newpeopleata communityplantnurserywasaconfronting experience. Healso had tolearn a newtravel

route,involving a bus,a train and a walk.Theother volunteersareteaching himtowrite,which has greatlyimproved his self-confidence.

“I likecoming her tojoin inwith all theseones [othervolunteersatthecommunitynursery]. I like having morning teawithalltheothersand having

a jokewithMartin [amentor],”Graemesays. Supportstaffand familyhavenoticed his increased friendlinessand independencesince volunteering atthenursery. 7

The coordinator,having observed the group,suggested activities thatutilisedthe participant'sexisting skills,forexample settingthe tableforlunch,ormixing potting soil ata plant nursery.The coordinator alsoidentified small potentiallyproblematicissuesand dealtwith thembeforetheybecame barriers.

Overthe following monthsthe coordinatorgraduallywithdrewsupportbutcontinued tomonitor the group intermittently,and to provide supportwhere needed to helpmaintain the participant'sattendance and active participation. Thisfinal stage wascalled monitoring and ongoing support.

Monitoring and ongoing support.This final stage involvesintermittentmonitoring and as-needed support. When group activitiesalter,mentorsmove on,or the person’sneedsorcircumstanceschange,renewed short-termsupportfromthe TTR coordinatorisoftenneeded.Suchsupportshould be available indefinitely.Ourresearchprojectonlyprovided for ongoing supportforsixmonths,butparticipant supportneeds were notrestricted to such an arbitrarytime line.

Fortunately,ourSydney-based industrypartnerthe Australian Foundation forDisability(AFFORD) secured somefunding to employa TTR coordinator.Thisprovided the opportunityforthe TTRProgram to move froma time-limited research projectto become partof ongoing service delivery.Italso enabled long-termmonitoring andsupportto be provided toallTTR participants,including research participants. Thisproved invaluable,and in a numberof cases was the difference between an established placement continuing ornot.

Forexample,a woman with disabilityhad attended aseniorsgroupforovertwo years when a drop-in visitbythe TTR coordinator revealed thathermentorshadmoved on,and the woman often sat alone and rarelyparticipated in group activities.6The TTR coordinator remedied these concernsbyreturning to thementorrecruitment and trainingstage, afterwhich hernewmentorsupported her to increase her active participation.6

COMMUNITYCAPACITYAND THE TTRCOORDINATOR ROLE

Training and supporting mentors within communitygroupsdevelops theircapacityto supportpeople with disabilityto becomeactive,sociallyincluded groupmembers.Using existing communitysocial infrastructure,ratherthan funding newretirementgroupsforpeople with disability,makessense when promoting social inclusionand maywell be highlycosteffective overtime (wedid notevaluate cost). However,the TTR Programisnota low-costoption.The time needed to supporteach person ishighly individual,and dependson circumstancesandabilities.Therefore,the figureswe gathered abouta small subgroup of participantsprovide a rough guide atbest.We found thatconstructing the realityforeach person with disabilityrequired between 45 and 170 hours (average =90 hours)of the TTR coordinator’s time.6

The TTR coordinator’spivotal role requiresa personwith the capacityto negotiate opportunitiesfor people with disabilityto be fullyincluded inmainstreamgroups,bybuilding capacityin those groups.6

Because of the individualand time-consuming nature of supporting individualsto join communitygroups, a dedicated TTR coordinatorposition isneeded to run the program. The coordinatorneedsa range of advanced skillsin disability,case managementandcommunitydevelopment.Such skillsare notwell developed amongmostdisabilitystaff.Our research indicated thatexisting disabilityservice staff have neitherthe skillsnortimeto do the job properlyasan add-on.

RESEARCH TO PRACTICE AND SCALINGUP

An importantgoal of disabilitypolicyinvolvespeoplewith disabilitybeing included and participating activelyin the community. The challenge forserviceprovidersandfamiliesishowto achieve,and sustain,inclusion.Disabilityservicesand theirstaff need clearguidelinesand evidence-based resources on howto meetthisgoal.

Aspartofourcommitmentto translating theTTR researchfindingsinto everydaypractice,Sydney UniversityPress will publish ourmanualin late 2013.The manual will provide a detailed and practical guide to each componentof the TTR model.8Included with themanualis theDVD Transition to Retirement, featuring the individual storiesof sixmen and women who tookpartin TTR Program.These participantscan provide rolemodels forothers witha disabilitywho are thinking aboutretirement,and

theDVD providesconcrete,easy-to-understand examplesof sociallyinclusive participation.

Having good training resources like these is important,butresourcesare not enough to guarantee the scaling up of promising interventions. Too often practices likeTTR remain as interesting one-off initiatives withoutlastingimpactorwidespread availability.

In its2013-2017long-range plan,the USNational Institute on Disabilityand Rehabilitation Research (NIDRR)adopted a stages-of-research frameworkto guide its funding of disabilityresearch.9These stages include Intervention Efficacywhich,like ourTTR research,involves “testing whetheran intervention is feasible,ispractical,and can yield positive outcomes forindividualswith disabilities” (p.

20,304)9.Butthe NIDRRframeworkalso includesafurtherstage –Scale-up Evaluation – which

“examines the challenges to successful replicationsand the circumstancesandactivities thatcontribute to successful wide-scaleadoption of interventions”(p.20,304)9.This final stage is intended to help generate widespread implementation of evidence-based practices.

Although successful,the research-based trial of the TTR Programinvolved fewerthan 30 people with a disabilitywho joined a communitygroup. Participants were drawn froma small numberof disability service settings.If the findingsof Australian applied disabilityresearch of thiskind are to be taken up nationallybydisabilityservices,then research and developmentfunding isneeded to find effective ways to scale up such interventions.

POLICYAND PRACTICERECOMMENDATIONS

•Disabilityindustrycapacity:Theskillsneeded to deliver the inclusive social outcomes thatwere provided bythe Transitionto Retirement(TTR)Programare poorlydeveloped inmanypartsof the disabilityindustry.Appropriate training resourcesand expertise are neededto build the skills required to deliverthe program.

•Dedicated TTR coordinator:The highlyindividual and time-consuming natureof supporting individuals to join communitygroups,requiresa dedicated TTR coordinator position.

•Funding and auspice:Having a TTR coordinatormeans thatan appropriate funding source is needed,butinAustralia itisunclear whichlevel of governmentwould providethe funding.Itis also unclearwhich disabilityservice type (employment,accommodation,communityaccess)

could auspice a TTR service mostappropriately.a Theseissuesneed to be clarified.

•Policyand funding are needed now:Issuesof funding and auspice could become clearerunder the individualisedfundingarrangementsenvisaged forthe National DisabilityInsurance Scheme (NDIS),with individual retireespresumablyable to purchase a TTR service (if available). However,clearprovisionneeds to be made nowforpeople to retire,in preparationfor the NDIS full roll outwhich issomeyearsaway.

•Flexible access:Older people with disability,who mayalso use disabilityservices,require flexible access to serviceson an individuallydetermined basisso thattheycan attendmainstream communitygroups,regardlessof thefunding source of thatgroup.

Scaling up forwidespreadimplementation: Australia should adopta stagesofresearchmodel thatprovidesdisabilityresearch funding notonlyforsmall-scale research suchasours that demonstratesefficacy,butalso offers funding forscaled up research thatcould resultin wide- scale adoption of theintervention.9

aTheclosestexampleis theTransitiontoWork(TTW)programwhichis fundedatastateleveland providesupto2yearsof fundingperpersonforworkpreparationtraining.However,TTRcannotbe timelimitedin thesameway,becauselong-termmonitoringandas-neededintermittentsupportis requiredto dealwithproblemsthatarise.