Housing for Persons With Mental Illness

8/14/2019 Housing for Persons With Mental Illness

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Housing For Persons with Mental Illness:

Understanding Their Experiences

Submitted by the Schizophrenia Society of Alberta, Edmonton & Area Chapter

This research project was made possible through financial contributions fromthe Edmonton Joint Planning Committee on Housing Community Research Fund.


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2007 Schizophrenia Society of Alberta, Edmonton & Area Chapter.

All aspects of this research project were completed for the SchizophreniaSociety of Alberta, Edmonton & Area Chapter by:

Ms. Tara Koehler,Program Coordinator

(Interviewer andReport Writer)

Mr. Giri Puligandla, B.Sc.Executive Director(Project Manager)

Ms. Carla Semeniuk, M.Urb.Pl.Board Secretary &

Housing Committee Chair(Volunteer Project Advisor)

We are grateful for the contributions of all of our survey respondents andespecially the interview participants who gave their time in order to help usunderstand their experiences getting and keeping housing in Edmonton.

Thank you to Cheryl Sulatycky who volunteered to compile the survey results.

Excellent and prompt transcription services provided by Ms. Joanne Hartigan.


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HousingforPersonswithMentalIllness:UnderstandingTheirExperiences

FinalReportSubmittedbytheSchizophreniaSocietyofAlberta,Edmonton&AreaChapter___________________________________________________________

ContentsI.Overview

Abstract......................................................................................... 1

Project

Goals.........................................................................................

2

Background........................................................................................... 2

II.ProcessDatacollectionandEvaluation.......................................................... 4

Limitations............................................................................................ 6

III.FindingsPartA Survey

Summary...................................................................................... 8

PartB Interviews

Summary......................................................................................

10

ExaminationofData................................................................... 11

IV.DiscussionDiscussionofData................................................................................ 34

Conclusion............................................................................................. 37

Appendices

Survey..................................................................................................... A

SurveyResults....................................................................................... B

HousingChronologies. C

InterviewDocuments...........................................................................

D

ConfidentialityAgreement.. E


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I.OverviewAbstractIn

its

current

research

project,

the

Schizophrenia

Society

of

Alberta,

Edmonton

and

Area

Chapter

(SSAEA)askedmembersofitsorganizationtosharetheirthoughtsaboutlongtermhousingoptionsfor

mentallyillpersonsinEdmonton.

Objective:Tobetterunderstandtheexperiencesofpersonslivingwithmentalillnessandtheirfamily

caregiversinfindingappropriateandaffordablehousingwithnecessarysupports.

Method:Weaskedbothpersonswithmentalillnessandtheirfamilymemberstosharestoriesabouttheirquestforhousing,mailingoutashortsurveytomembersandconductingthirteenindepthfollowup

interviewsbasedonthesurveyresults.

Results:Intervieweesexpressedhousingconcernsthatfellintothefollowingcategories:(1)IncomeandFinancialStability.Intervieweesmostlyreliedonincomesupport(suchasAISH)ora

pensionduetoadiagnosisofmentalillness,and/orparttimeortemporarywork,andmanyreportedthat

theamountreceivedwasinadequatetoprovidethemwithappropriatehousing. Manywereforcedto

liveintheinnercity,inshoddyandrundownhousing,wheretheywerevulnerabletovictimization

andwheresupportserviceswerelacking.(2)HousingSupportServices.Intervieweescalledforacontinuumofsupportservicelevels,

individualizedaccordingto(sometimesfluctuating)needs.Intervieweesthoughtthatthosewhowork

withthementallyillneedtohavemoreappropriatetrainingandflexibleattitudes,andthattheyshould

facilitateskillandresponsibilitybuildinginmentallyillpersonswherepossible.

(3)

Home

and

Social

Environment.

A

safe

and

healthy

home

environment

with

a

reasonable

measure

of

privacy,positivepeerrelationships,andsuitableoptionsforrecreational,vocationalorpersonaltime

duringthedaywasseenasideal.Aharmreductionapproachtosmoking,drinkinganddrugusewas

favouredoverzerotolerancepolicies.Familyinvolvementinresidentsliveswasalsoseenasanecessary

partofbuildingstabilityinahousingsituation.

(4)HealthandSocialServices.Intervieweesexpressedaneedforcoordinatedmanagementofcare

servicesforthewholepersonprovidedbyunderstandingprofessionalscontinuouslyfromthehospital

tothecommunity(andback)basedonneed. Intervieweesalsocommentedthatsufficientlegal

mechanismsneededtobeinplacetohelpthefamilyintervenetopreventdeteriorationintheirloved

ones.

(5)AdditionalConcerns.Otherdifficultiesrelatedtohousingforthementallyillwerethehighdemand

forthis

kind

of

housing

(with

few

options

and

along

waiting

list),

caregiver

stress

and

burnout,

difficultiescausedbythenatureofmentalillnessanditstreatment,stigma,andthefewoptionsavailable

fortheespeciallyhardtohouse(e.g.thosewithadualdiagnosis).

Conclusion:Moreresearchisneeded,butthefindingssuggestthatareassessmentofEdmontonscurrenthousingandsupportsystemwithaneyetoprovidingsafe,affordablehousingwithflexibleand

comprehensivecareforthewholepersoncouldgoalongwaytowardsprovidingstable,longterm

housingoptionsforthementallyill.

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ProjectGoals

Thepurposeofthisresearchprojectwastogatherandanalyzedatatobeusedtobetter

understandtheexperiencesofpersonslivingwithmentalillnessandtheirfamily

caregiversinfindingappropriateandaffordablehousingwithnecessarysupports. The

projectaimedto:

(1)Derivekeythemescorrespondingtothediverserangeofexperiencesofpersonslivingwithmentalillnessandtheirfamiliesinsecuringappropriatehousingand

supports;and

(2)Identifymajorissuesrelatedtokeythemes,aswellaspotentialameliorativestepsindicatedbyrespondents.

Background

Thereisconsiderableevidencethatpersonslivingwithmentalillnessfacea

disproportionatelyhigherriskofbecominghomeless.Theirfamilymembers,whoare

moreoftenthannotimplicitlyresponsiblefortheirwellbeing,findthemselves

scramblingtosecureappropriatehousingfortheirlovedones.Forthosepeoplewhodo

nothavefamilyorfriendstofallbackon,thestreetsareanalltooprobableoutcomeof

afruitlesssearchforaplacetocallhome.

Personslivingwithmentalillnessareaveryheterogeneousgroup.Somerequire

considerablesupportsthroughouttheirtimeinthecommunity,thusfindingservicesto

goalong

with

their

housing

is

paramount.

Others

are

more

or

less

independent,

but

mayexperiencebriefperiodsofrelapsethatcouldresultinevictionorotherlossoftheir

homes.Therearealsothoseforwhomindependenceispracticallyanunreachablegoal:

theirabilitytoliveinthecommunityreliesonacombinationofhousingandsupports

similartothatprovidedinhospital.Thisdiversegroupisalsoatincreasedriskof

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substanceabuse,criminalrecords,lowincome,andnegativestigmaamongthegeneral

public,whichfurthercomplicatesthesearchforhousing.

Becauseoftheheterogeneousnatureofthementallyill,theSchizophreniaSocietyof

Alberta,Edmonton&AreaChapter(SSAEA)undertookthisresearchprojecttobetter

understandthenatureoftheseperspectivesandexperiences. Thefindingswillhelpus

planthepotentiallyameliorativestepstotakeinordertopreventthisatriskpopulation

frombecominghomelessand/ortopreventtheirmentalandphysicalconditionsfrom

deteriorating.

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II.ProcessDataCollectionandEvaluation

Surveys(includedasAppendixA)werecreatedbytheSSAEAExecutiveDirectorand

ProgramCoordinatorandmailedtoall220currentSSAEAmembers,excluding

honoraryandcomplimentarymembers. SincemostSSAEAmembersarefamily

membersofpersonswithamentalillnessandnotillthemselves(andsoansweredthe

surveyontheirlovedonesbehalf),somesurveysweregiventoProsperPlace

Clubhouse

and

the

Canadian

Mental

Health

Association

for

distribution

among

the

personswhomakeuseoftheirprogramstogathermorefirsthandaccounts. Afew

surveyswerealsotakenbySSAEAvolunteerstodistributetoappropriatefamily

membersorfriendswhoarenotSSAEAmembers. TheSSAEAresearchteamreceived

ninetyoftheapproximately250surveysbackforaresponserateof36%. Thedatafrom

thesurveyswasconsolidatedbyavolunteerresearchassistantwhosigneda

confidentialityform(includedasAppendixD).

Thebottomofthesurveyaskedrespondentstowritetheirnameandcontact

informationonthelineprovidediftheywouldbeinterestedinparticipatinginan

interviewabouttheirhousingexperiences,andasmallhonorariumwasofferedfor

theirhelp(thisinformationwasremovedbytheProgramCoordinatorbeforebeing

passedontotheresearchassistantforsurveydataentry). Thirtyfoursurveysheets

withname

and

contact

information

were

received:

nine

from

persons

with

mental

illnessandtwentyfivefromfamilymembersofapersonwithmentalillness.Ofthe

totalthirtyfour,fifteenrespondentswerechosentobeinterviewed:sixpersonswith

mentalillnessandninefamilymembers. TheProgramCoordinatorschoiceof

interviewcandidateswasbasedoneachrespondentsanswersonthesurvey. Shechose

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asdiverseasampleofrespondentsaspossible,includingpersonswhoreportedlittle

troublefindingappropriatehousingaswellasthosewhoexpressedagreatdealof

frustrationwiththeprocess;personswhohadbeenhomelessandpersonswhohadnot;

andpersons

who

experienced

extra

difficulty

due

to,

for

example,

adual

diagnosis

(a

mentalillnessalongwithadrugaddiction),aswellaspersonswithrelativelymore

manageableillnesses.

Allrespondentswhoindicatedinterestinparticipatinginaninterviewwerecontacted

andthirteeninterviewswerecompleted:onepersonwithmentalillnesschangedhis

mind

at

the

last

minute

and

one

family

member

did

not

respond

to

the

contact

in

time

tosetupaninterview,bringingtheratiotofiveintervieweeswithmentalillnessand

eightintervieweeswhowerefamilymembers.Eachparticipantwasprovidedwithan

informationletterandaconsentform.Thepurposeofthestudyaswellasanyrisksand

benefitswereexplainedtoeachpersonpriortoaskingfortheirconsent.Therelevant

lettersandconsentformareincludedasAppendixC.

InterviewswereconductedbytheSSAEAProgramCoordinatorinaprivateroomatthe

SSAEAoffice,intheintervieweeshome,orinaprivateroomatProsperPlace

Clubhouse. Allinterviewsweretaperecorded. Theintervieweraskedthreebroad

questions:firstly,sheaskedtheintervieweestorelatetheirstoryoftryingtofind

housingforthemselvesortheirmentallyilllovedone,fromstarttopresent;secondly,

sheaskedthemtorelateanysecondhandstoriestheymighthaveofthesame;thirdly,

sheasked

what

should

be

done

to

improve

the

housing

situation

in

Edmonton.

Interviewslastedfromtwentyminutestoanhourandtwentyminutes. Afterthe

interviews,a$25giftcardtoSafewaywasmailedtointerviewees.

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Thetaperecordedinterviewsweresenttoatranscriptionist(whosigneda

confidentialityform),andthentheProgramCoordinatoralteredtheidentifyingnames

ofpersonsandplacesmentionedbyintervieweesinthetranscripts. TheProgram

Coordinatorkept

five

transcripts

herself,

sent

three

to

the

SSAEA

Housing

Committee

Chairperson,andtheremainingfivetotheSSAEAExecutiveDirectortobecoded

keyphrases,wordsandconceptswereidentifiedandextractedfromwithinthe

interviewtext. Achronologywasalsomadeforeachindividualsexperience,which

canbefoundinAppendixC.

The

Housing

Committee

Chairperson,

the

Executive

Director

and

the

Program

Coordinatorthenheldaworksessiontoamalgamateandanalyzethedata,usingan

adaptedgroundedtheoryapproach. First,eachwrotecodesthatrepresentedpositive

factorsfromtheirassignedtranscriptsonawhiteboard. Theygroupedthecodesunder

broaderthemesandthenintofouroverallcategories. Exceptionswerewrittenina

separatespace. Next,codesthatrepresentednegativefactorswerewrittenontheboard

andwereusedtoenrichthedataineachcategory. Negativefactorsthatdidnotfit

underexistingcategoriesweregroupedunderexceptions,tobediscussed

individuallyinthereport. Adraftofthereportwasthencompiledandsenttothe

intervieweesforfeedbacktoensurethatintervieweesfelttheirresponseswere

sufficientlyanonymousandthattheircommentswererelatedinaccuratecontext.

Limitations

1.SamplePopulation.ThebulkofthesurveysweresenttoSSAEAmembers,whoareby

andlargefamilymemberswithastrongcommitmenttohelpingtheirilllovedones.

SomesurveyswerecopiedandforwardedbyrecipientstoProsperPlaceClubhouseand

theCanadianMentalHealthAssociation. Thisunplanneddistributionservedto

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capturetheopinionsofmorepersonswithmentalillnesswhodidnotnecessarily

belongtothefamilymovement. However,thenumberoffamilymembersstill

outweighedthenumberofmentallyillpersons,bothinthesurveyandtheinterviews.

Afuture

study

would

ideally

send

surveys

to

patients

at

Alberta

Hospital

as

well

as

homelesssheltersinthecitytocapturetheopinionsofthosewhomaynotbe

functioningwellandmaynothaveanyfamilymemberstohelpandsupportthem.

2.PossibleResearcherBiasesandLackofExpertise.ThestudywasconductedbySSAEA

members:twostaffmembersandavolunteerboardmember,andthemajorityofthe

surveys

were

filled

out

by

members

of

the

SSAEA.

Since

our

organizations

focus

is

on

thefamilyexperienceofmentalillness,thefindingswilllikelybeweightedinthat

direction. Also,noneoftheinvestigatorswereprofessionallytrainedqualitative

researchers,andonlytheExecutiveDirectorhadbasicexperienceusingqualitative

methodology,particularlythegroundedtheorymethodweadaptedtoconductour

study. Theseproblemsmightbecorrectedbyemployingprofessionalresearcherswho

arelessfamiliarwiththefamilymovementandmorerigorousintheirmethod.

3.TimeConstraintsandSampleSize. Theresearchershadthreemonthsinwhichto

completethisstudy,whichprecludedtheoptiontoenrichthedatabyconducting

additionalinterviewswitheachinterviewee. Italsomeantthattheinterviewsample

sizewasquitesmall. Withalongertimeperiod,moresurveyswouldbesent,more

personswouldbeinterviewed,andfollowupinterviewswouldbeemployed.

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III.Findings

PARTA.Survey

Summary

Firstly,itisimportanttonotethat78%ofsurveyrespondentswerepersonsresponsible

forafamilymemberwithmentalillness,andthereforeansweredthesurveyquestions

ontheirfamilymembersbehalf. GiventhatSSAEAismadeupmostlyoffamily

members,this

value

is

not

surprising.

However,

since

respondents

in

this

summary

willrefertotheillpersonsinquestion,itisusefultorememberthatmostofthese

answersrepresentawellinformedbutsecondhandreportwhich,wheresubjective

judgmentsarerequired,mayormaynotdifferfromtheresponsethatwouldhavebeen

givenbytheillpersonhimorherself. Asonerespondentwrote:

IamansweringforourgranddaughterbecauseIamabitfearfulofherreaction. Shemightbe

offended. Ontheotherhand,shemightanswerwiththesamecirclesandcheckmarksasmine.

Respondentsweremostlybetweentheagesoftwentyfiveandfiftyfive,and75%were

male. Thevastmajority(93%)receivedincomesupportorapensionduetoadiagnosis

ofmentalillness. In71%ofcases,respondentsansweredthattheycurrentlylivedin

permanentorlongtermhousing. Ofthese,79%feltthatthishousingmettheirneeds,

howeverthecommentsprovidedinthespacebesideapositiveresponsewere

sometimes

ambivalent.

For

example,

one

comment

read:

Thehousingmeetshisphysicalneeds,heisshelteredandfed,medsaregiven. Heiscompliant.

Heusedtobeunabletohousekeeponhisown. Iwashhisclothes,cleanhisroom. Hesleeps16

hours/day. Therearenoactivitiesplannedforhim.

Althoughhousingmaygenerallybeconsideredabasicphysicalneed,thisresponse

suggeststhatthedistinctionbetweenphysicalneedsandpsychologicalneedsisnot

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alwaysdiscernableinthecaseofamentallyillperson,andsuchafactorshouldbe

takenintoconsiderationwhenhousingthementallyill. Otherexamplesofambiguityin

responseswerethosewhoansweredthattheircurrenthousingwasadequatebutthat

theperson

lived

in

the

family

home

(and

they

had

not

yet

tried

to

find

alternate

arrangements),orinhousingthattheyfearedwouldnotbepermanent. Importantly,

61%ofrespondentsspentmorethanonethirdoftheirincomeonhousingcosts.

Respondentsreportedtroubleintryingtofindhousingin64%ofcases. Theywere

givenalistoffivespecificdifficultiesandaskedtocheckallthatappliedtotheir

experience.

The

following

results

were

reported:

- 27%didnotknowwhereorhowtostartlooking- 20%foundtheapplicationprocesstoodifficultorconfusing- 31%saidhousingwaitinglistsweretoolong- 32%couldnotaffordtheplacetheywanted- 24%couldnotgetthesupportstheyneededattheplacetheywanted.

Additionalcommentswerealsoinvited,andhererespondentsmentionedalackof

upkeep,lackofsafelocations,lackofappropriatetrainingforstaff(andstaffturnover),

lackofavailability,inappropriaterulesandarrangementsingeneral,lackoftransitional

housing,evictionsbasedonthesymptomsofillnessandfeelingsofsegregation.

Ofnote,inthelasttenyears49%ofrespondentshadbeenresidentinthehospitalfor

morethantwomonthsand51%hadlivedintheirparentalhome.22%ofrespondents

hadlived

in

an

emergency

shelter

in

the

last

ten

years,

and

25%

reported

having

been

homelessatonetimeintheirlives.

DetailedsurveyresultsappearinAppendixB.

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PARTB.InterviewsSummary

Housingconcernsandexperiencesexpressedintheinterviewsweredividedintofive

majorcategoriesofconcern:(1)IncomeandFinancialStability,(2)HousingSupport

Services,(3)HomeandSocialEnvironment,(4)HealthandSocialServicesand(5)

AdditionalConcerns. Eachcategoryissubdividedintothemes,asoutlinedbelow.

CATEGORY1:IncomeandFinancialStability

THEME1:Sufficientincomeisrequiredtoaffordappropriatehousing.

THEME2:

Employability

and

income

from

work.

THEME3:Sufficientrentalsubsidiesandassistance.

CATEGORY2:HousingSupportServices

THEME1:Needforcontinuumofservicelevels,individualizedaccordingtoneeds.

THEME2:Needforfacilitationofskillandresponsibilitybuilding,whenpossible.

THEME3:Appropriatetrainingandworkingconditionsandattitudeforstaffwhoworkwiththosewith

limitations.

CATEGORY3:HomeandSocialEnvironment

THEME1:

Safe

and

healthy

home

environment

with

reasonable

measure

of

privacy

and

positive

peer

relationships.

THEME2:Suitableoptionsforrecreational,vocationalorpersonaltimeduringtheday.

THEME3:Aharmreductionapproachtosmoking,drinkinganddruguse.

THEME4:Encouragementoffamilyinvolvementandadvocacyinresidentslives.

CATEGORY4:HealthandSocialServices

THEME1:Coordinatedmanagementofcareservicesforthewholepersonprovidedbyunderstanding

professionalscontinuouslyfromthehospitaltothecommunity(andback)basedonneed.

THEME2:Sufficientlegalmechanismsforfamilyinterventiontopreventdeterioration.

CATEGORY5:AdditionalConcerns

THEME1:Highdemandforhousingwithfewoptionsandalongwaitinglist.

THEME2:Familyisforcedtointervene,resultingincaregiverstressandburnout.

THEME3:Publicmisperceptionofmentalillnessandhomelessness.

THEME4:Difficultiescausedbythenatureofmentalillnessanditstreatment.

THEME5:Fewoptionsforthehardtohouse.

THEME6:Innovativemodelsofsupportivehomeownership.

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ExaminationofData

CATEGORY1:IncomeandFinancialStability

THEME1:Sufficientincometoaffordappropriatehousing.

Affordablehousingtakesonaspecialmeaningforpersonswithmentalhealth

concerns,ashousingcostsoftenincludefeesforvarioussupportservicesdependingon

need. Supportservicescanrangefromsimpleroomandboardto24hoursupervision

andsupports. Intervieweesreportedreceivingincomefrommedicalwelfare,assured

incomefortheseverelyhandicapped(AISH),parttimework,pensionanddisability

payments,fulltimework,oracombinationofthese. Quiteafewinterviewees

commentedthattheirneedswerebarelymetornotmetwhenlivingonafixedincome,

especiallyinreferencetoAISH. Oftenincomecoveredbasicexpensesatthesacrificeof

agoodlocation,asmanycheapindependentandsupportedlivingenvironmentsare

locatedintheinnercity,whichwasconsideredanundesirable,frighteningand/or

dangerousplace

for

vulnerable

individuals.

Severalfamilymembersspokeofsubsidizingtheirilllovedonestogetthemintoan

appropriatehousing/carearrangement,andafewremarkedthattheywerelucky

thattheycouldaffordtodothis. Somecommentedthattheywereunsureifknowledge

ofsuchsupplementswouldthreatentheirchildsalreadyinadequateAISHpayments.

THEME2:

Employability

and

income

from

work.

Anillpersonsabilitytoworkandthereforemaintainanincomesufficienttopayfor

livingarrangementswashighlydependentonthedegreetowhichthepersonwas

impairedbecauseofhisorherillness. Someindividualsweresimplytooillto

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contemplatework,andsoreliedentirelyongovernmentorformeremployerdisability

paymentsand/orfinancialsupportfromfamilymembers. Otherswereabletotakejobs

dependingonhowwelltheywereatdifferenttimes,anddidsotofeeladegreeof

independenceand

increased

stability,

and/or

earn

pocket

money

to

supplement

a

fixedincome. However,thechangeablenatureofmentalillnessmeansthatanill

personmayverywellbefitforworkatcertainperiodsoftimeandnotatothers.

Thesocialpressuretoworkwasquitestrong,especiallyincircumstanceswhere

individualshadcollegeoruniversitydegrees. Thiscausedaconsiderableamountof

stressinsomecases. Asonewomanputit:

Peoplesayyourelazy,yourejustabum! Youlooklikeyoucanwork,andhowcomeyoureon

AISH?

Thiswomanmovedfromjobtojob,beingfiredorforcedtoquitasthestressbecame

toomuchforhertohandle,causinghertoloseherincomesecurityandeventuallyto

loseherapartmenttoo. Shethenmovedbackinwithherparents. Anotherinterviewee

talkedaboutburningbridgesinreferencetohisjobexperiencesbeforehewason

medication. Thesetwoindividualslackedgoodreferenceswhenapplyingforother

jobs,makingithardertogetsubsequentemployment.

Onlyoneintervieweewasemployedsteadilyfulltimeanddidnotreceiveany

subsidies,atriumphthatallowedhimaconsiderableamountoffreedomtochose

wherehewantedtolive,andtomovetoanotherplacewhentheywerentfixing

thingsattheoldone. Hisexperiencecontrastedthatofmanyothers,whowereforced

tolive

in

housing

that

was

in

ill

repair

because

they

had

no

other

options.

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THEME3:Sufficientrentalsubsidiesandassistance.

AverypositivemodelofsubsidywasreportedinreferencetoCapitalRegionHousing

Corporation(CRHC)projects,whererentissettoonethirdofanindividualsincome.

Thiskindofhousingwasscarce,however. Whilemanyoftheintervieweesreferredto

it,nonehadactuallybeenabletoprocureit. Intervieweesreportedtwoandtwoanda

halfyearwaitinglistsaswellasflatoutrefusalstoevenbeaddedtothewaitinglist.

Anotherhelpfulmodelwasafixedratesubsidy,alsofromCRHC. Onerecipientona

fixedincomereportedthatthesubsidywasawelcomerelieftothenoticethatherrent

wasabout

to

increase

by

$75.

She

had

resided

in

the

same

privately

operated

apartmentbuilding,payingroughlythesamerentforwelloveradecade,andbelieved

thattherecentincreasehadtodowiththeboomingrentalmarketinEdmonton. She

expressedconcernaboutthedangersoftherisingcostofhousinginEdmontonfor

thoseonafixedincome.

AnotherindividualhadamentalillnessbutalsoqualifiedforPersonswith

DevelopmentalDisabilities(PDD)funding,whichpaidforhimtoresideinahomewith

awomanwhohadconsiderabletrainingandexperiencemanagingpersonswith

cognitivedisabilities. Inhismothersexperience,suchcaretakerswerealuxury

(outsidethehospital)forpersonswithmentalillness.

CATEGORY2:HousingSupportServices

THEME1:Needforcontinuumofservicelevels,individualizedaccordingtoneeds.

Simplysecuringaroofoveronesheadwas,inmanycases,notenoughforthosewith

mentalillness. Whileopinionsaboutthenecessarylevelofsupportdifferedamong

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intervieweesdependingontheirownneeds,mostrequiredsomelevelofsupport. A

needwasseenamongintervieweesbothfordifferentkindsofsupportivehousing,as

wellasacapacityfordifferentlevelsofcarewithinonehousingfacility,thatis,an

abilityto

tailor

care

to

the

individual.

Storiesaboundedoflovedonesbeingplacedinahomethatsimplylackedsufficient

supervision. Thiswasespeciallythecaseinapprovedhomes,inwhichtheownerofa

homegetsastipendfromthegovernmentforrentingtopersonswithmentalillnessin

exchangeforprovidingsomeguidanceandcaretothosetheytakein. Thereweremany

disagreementsbetweenfamilymembersandapprovedhomeoperatorsastohowmuch

carewasexpectedofapprovedhomeoperators. Somefamilymemberscomplainedthat

theirlovedonesstoppedtakingtheirmedicationsduetoalackofmonitoring,even

whensuchsupervisionhadbeenassuredbytheapprovedhomeoperator. The

approvedhomeoperatorwouldnottakecareoflaundrydutiesashadbeenpromised,

andillindividualsweresometimesexpectedtomakemealsandalsotocleanupafter

themselveswhentheydidnothavethecapacitytodoso. Althoughtheapprovedhome

operatorwould

often

be

described

as

good

and

kind

in

these

cases,

the

level

of

care

wassimplynotsuitable. Thislikelyrelatestoaninsufficientleveloftrainingfor

operators(seetheme3).

Thedemandforgrouphomeswithahighlevelofsupportmadeitimpossibleforone

intervieweetofindagrouphomeforhisson. Hereportedthathissonslevelof

functioningwassolowthatnogrouphomewouldtakehim,andsincethehospitalhad

dischargedhim,thesonhadtoliveathome,placingagreatdealofstressonhisfather.

Inalltypesofhousing,cookingandcleaning(includinglaundry)serviceswere

reportedastopconcerns.Itwasmentionedmanytimesthatthefamilyhadtocleanup

afterillindividuals,bothforpersonslivinginindependenthousingandingroupand

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approvedhomes. Onewomanwhohadmovedaroundtomanydifferenttypesof

housinghoardedgarbageinherroomandwasnevermadetocleanitout,leavingher

mothertoconstantlydoitforher. Anothercouplespentmuchoftheirtimeapologizing

tolandlords

and

well

meaning

friends

who

had

given

their

son

aplace

to

stay,

as

the

sonwouldleavetheseplacesinanappallingmess. Manyindividualswereevictedfor

themessestheycreated.

Manyintervieweesexpressedthedesirefortheillpersontomaintainthehighestlevel

ofindependencepossible. Howeveronewomanobservedthatadequatelydetermining

anillpersonsleveloffunctioningwassometimestherootoftheproblem. Whenher

sonunexpectedlyqualifiedforfundingforadevelopmentaldisabilityinadditiontohis

mentalillness,sheexplainedthatthecircumstances:

justunderlinedhowhardhedbattledandhowhardhedstruggledtomaintainsometypeof

normalcyandhowgoodhewasathidingthings,histruesituation.

Anumberofotherfamilymemberssaidthattheyweresometimesconvincedthattheir

lovedonescouldcareforthemselves(forexample,dotheirowncookingandcleaning),

onlytofindoutthattheycouldnotperformthesedutieswhenlefttothemselves. This

discrepancyresultedinaneedforthefamilysinterventionand/oramovetoadifferent

kindofhousingthatprovidedmoresupport. Thiswasmostlyaprocessoftrialand

error. Asoneintervieweeputit:

themorewelivethrough,themorelimitsweseeforoursonwehavetohavehope,butwe

havetoberealistic.

Theproblemwasheightenedwhenindividualsfluctuatedbetweenlowandhigh

functioning.One

woman

expressed

the

desire

to

see

her

son

move

from

independent

livingtogrouphomesandbackagainasneeddictated.Anotherintervieweesdaughter

seemedtofunctionwellenoughtoliveindependentlyuntilshestoppedtakingher

medicationsandtheparanoiathatispartofherillnesstookover. Shewasthenoften

foundlivingonthestreetsincitiesthousandsofkilometersfromEdmonton.

FinalReport 15


19/58

Manypeoplecomplainedthattheresimplywasnotenoughsupportedhousingin

Edmonton. Oneintervieweewasabletogether40yearolddaughterintoanassisted

livingapartmentwhennoothersuitableoptionpresenteditself. Howeverherdaughter

encounteredan

unwelcoming

atmosphere

and

all

out

hostility

from

the

other

residents

forappearingtooyoungtobethere. Asawomanwhohadspentyearsadvocating

forhousingforthementallyillandresearchingpotentialhousingprojects,shemadethe

commentthat,

gettingthemoneyforthebuildingisnotthehardpart. Itsgettingthemoneyforthesupport

services.

Inlinewiththis,oneintervieweetoldasecondhandstoryofacouplewhosenttheir

sontoliveinabrandnewbuildingdedicatedforpersonswithmentalillness. The

sonhadtocomehomeaftertwoweeksbecausehewasunabletocopewiththelackof

supports. AnotherintervieweetoldofanewgrouphomeinoneofEdmontons

surroundingcommunitiesthatisneverfilledbecause,intheintervieweesopinion,a

zerotolerancepolicyondrugusehascausedthemtoevictmanypotentiallongterm

clientsratherthanhelpthemmodifytheirbehaviors. Overcrowdedhomelessshelters,

alsonoted

by

interviewees,

further

reduced

the

choice

of

housing

options.

Therewasacomplaintfromhighfunctioningindividualsthatgrouphomesrules

sometimesinfringedtoofarontheirfreedom. Onegrouphomeresidentcomplained

thathewasnotallowedtousethekitchentocookhisownmeals,eventhoughhewas

abletoandwantedtodoso. Anotherstressedthat,inhiswords,alaissezfaire

attitudetowardsgrouphomeresidentswasmostneeded,andthathavinginflexible

rulesmadeforastiflingatmosphere.

Therewereotherrequestsforanamountofcarethatfellbetween24hoursupportsand

laissezfaire,suchasanarrangementinwhichthegrouphomeoperatorlivesoutof

thehome,butcomesbytodelivermedicationsandoneortwohotmealsaday. Some

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20/58

wouldprefertheownertodothedishesandthecleaning,andotherswouldpreferthat

theresidentslearntodothesetasksthemselves,dependingontheircapacitytodoso.

Transitionalhousinginwhichapersonreceivedsupportandlifeskillstrainingmeant

topreparethemforanincreasedlevelofindependencewasaveryhelpfulstepfor

manypeople,andresultedinsomesuccessstories. Otherstories,however,focusedon

themaximumtimelimituniformlyimposedonallresidentsoftransitionalhousing.

Thetimelimitmadefamilymembersfeelthattheirilllovedoneswerebeingshoved

outthedoortofendforthemselvesbeforetheywerereadytobemoreindependent.

THEME2:

Need

for

facilitation

of

skill

and

responsibility

building

where

possible.

Manyintervieweesstressedtheneedfor(orhelpfulnessof)programsthatencouraged

residentstoperformdutieslikecookingandcleaningbythemselves,withguidance

fromthestaff. Theindividualwhowasabletograduatetoindependentlivinganda

fulltimejobsumsuphissuccesswithreferencetotransitionalhousing:

IcouldnthavegoneallthewayfromAlbertaHospitaltoindependentlivinginoneshot. Ihad

togo

through

the

stages

to

get

there.

Hewasespeciallyappreciativeofthehelphereceivedinonegrouphomeinwhicheach

memberwasaskedtoprepareamealfortherestofthemembersonceaweek. Another

intervieweemadeitclearthattherewasadifferencebetweenskillbuildingand

warehousingillpersonsthatis,notprovidingresidentswithanyrecreation

programsorincentivetoimprovetheirlevelsoffunctioning. Thiswasanundesirable

solution.

However,

it

was

also

clear

that

there

are

often

limits

to

rehabilitation.

The

aimofskillbuildingcannotalwaysbeindependentliving,norevensemiindependent

living. Afterherhardtohousesonssecondhospitalization,oneintervieweedescribed

institutionalizationoritsequivalentaspossiblytheidealsituationforherson:

Hisworldwassimplified. Hewasinalockdownsituation.itwasaverystructuredandsafe

placetheystartedtheirdaywithawalk,theyhadregularmeals,quietspace. Theyhad

FinalReport 17


21/58

therapy.Theyhadclassesandsuch,butitfelttousthathewassettledthereandcomparedto

theuncertaintyandthedangerinthecommunity,withoutthesupportsthatoursonseemedto

need,wehadnoobjectiontotheinstitutionalplacementatallalthoughIsupposeinstitutions

canbemisusedandseenaslimiting,theothersideofitwouldbethattheycanbesafeand

liberating.

Thisinterviewees

son

qualified

for

developmental

disability

funding

in

addition

to

his

mentalillnessfunding. Inthisnewsituation,theintervieweessonexperiencedbetter

qualityofcare. Theintervieweewasabletoputhiminahomewherethecaretakerhad,

astheintervieweeexplainedit,amuchbetterunderstandingofmemorylossand

cognitiveimpairmentthaninpreviousgrouphomesforthementallyill. Thecaretaker

setupabehaviormodificationprogramsimilartooneusedatAlbertaHospital;asthe

intervieweedescribed

it:

[thecaretakerfollows]asystemofrewardandconsequencesandsohisbehaviorsarereallyquite

closelymonitored,andheisrewardedforhissuccesses.

Shefeltthatthedifferencelayinthecaretakersinitiativetotailoraprogramtothe

needsoftheindividual.

THEME3:Appropriatetrainingandworkingconditionsandattitudeforstaffwhoworkwith

thosewith

limitations.

Intervieweesmentionedthattheleveloftrainingreceivedbygrouphomeand

approvedhomeoperatorswasinadequate. Oneindividualsuggestedthatconditionsat

regularhospitalsprovidedagoodexampleforhowstaffshouldberotatedin

communitybasedfacilitiestopreventburnout. Shesaid:

Withrotationofstaffnoonegetsburnedout. Worriesofevictionwouldbealleviated. Therisk

of

change

would

be

less

than

approved

or

support

homes

where

caregivers/operators

routinely

goonholidays,move,areoccupiedwithfamilypressures,etc.

Flexibilityandpatiencewerealsoimportant. Thewomanwhosesonisinahomefor

thedevelopmentallydisabledpraisedthecaretakersabilitytomakelightofhersons

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incorrectbehaviorandtakestepstohelphimcorrecthimself,ratherthankickinghim

out.

Afactoratleastasimportantastrainingseemedtobewhetherornotthecaretakertook

apersonalinterestinher/hisclientsandtreatedthemwithrespect. Oneinterviewee

describedthewomanwhoranhisboardinghouseasprobablythebestpsychiatristin

westernCanada,althoughthewomanwasnotamedicalprofessional. Shewas

flexiblewhenitcametorulesandevenrentpayment,reducingrentforsomeoneifthey

helpedwithmaintenancearoundthehouse. Anothermansaidthathissonjust

worshipshislandladybecauseofthepersonalinterestsheshowedtoherresidents,

andthatthehomesheranwasaboutthebestthingthatshappenedtohim. Inthe

intervieweesopinion,thesuccessofthissituationwasmostlyduetothewaythe

arrangementisunderstoodbyboththelandladyandhertenants. Heexplained:

Oursondoesnotliveinagrouphome. Helivesinahomerentedouttofivemenwhoall

happentobementallyill. Ithinkthisiswhytheyalldosowell. Theirlandladysetstherules

andsheistheonlyauthorityoverthem.

Thislandladyprovidedsupporttotheresidents,whomsheaffectionatelycalledher

boys,bydoingthecookingandsomecleaning,andalsobypickingupherresidents

medicationanddeliveringittothehouse. Shehadrenovatedthehouseandeven

boughtherboysapet. Whentheintervieweessonwentbackandforthtothe

hospitalseveraltimes,thelandladysavedhisroomforhimratherthanrentingitoutto

anotherperson. Theadvantageoftheofficialclassificationofthisarrangementas

equivalenttoroomandboard,ratherthanasagrouphome,wasthatthehousewas

understoodto

belong

to

the

tenants.

They

were

proud

of

having

aspace

of

their

own.

Asensitiveregardforaclientscapacitywasalsoafactorthatinfluencedhousing

stability.Anotherintervieweeattributedpartofherdaughterscurrentstabilityin

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housingtotherespectgiventoherdaughterbyanewnurseandpsychiatrist.She

asserted:

Peoplelivingwith[mentalillness]areintelligent,areoftenwelleducated,heldjobs,traveled,etc.,

andmustnotbetreatedaschildren.

CATEGORY3:HomeandSocialEnvironment

THEME1:Safeandhealthyhomeenvironmentwithreasonablemeasureofprivacyandpositive

peerrelationships.

Safetywas

abig

concern

for

family

members.

The

fact

that

many

supported

and

independentlivingarrangementsarelocatedintheinnercitywasasourceof

frustration. Afewintervieweesexpressedtheirlovedonesterrorofshelters

downtown,commentingthattheirlovedonesnaivetmadesheltersadangerousplace

wherebelongingswereconstantlystolen. Therewereseveralstoriesofwhatoneman

calledmoocherswhowouldpreyonvulnerableindividuals. Moocherswould

manipulateanillpersonintogivingthemmoneyandsometimes,inafewcaseswhere

theillpersonwaslivingindependently,aplacetoliverentfree.

Manyhomesweredescribedasrundown,shoddyandshabby.Upgradesand

simplemaintenancewereneglectedduetolackoffunding. Intervieweesalsodescribed

apoorquality(andlackofvariety)inmealsprovided:toomuchpastaandnotenough

freshproduce. Oneintervieweeexpressedconcernforafriendwhowasadiabeticand

wasfed

nothing

but

macaroni

in

her

group

home.

Intervieweeswereinterestedinstrikingabalancebetweensocialatmosphereand

privacyingroupliving. Insheltersandtransitionalhousing(andinhospital)itwas

commonforresidentstosharearoom,whichwasoftenlessthanadequate.Illpersons,

FinalReport 20


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especiallyiftheyareexperiencingparanoia,havethepotentialtofeelfearfulor

distressedwhennotgiventheirownspace,whichcanexacerbatetheirsymptoms.

Thereforeaprivatespacewaskey. Butthepotentialtoformfriendshipswithothersin

similarsituations

also

characterized

agood

housing

arrangement.

For

example,

one

intervieweedescribedhissonsboardinghouseverypositivelybecausealltheresidents

werefriendsandoftenwentouttogethertoplaypool. However,anotherinterviewee

describedherdaughterasveryreluctanttobearoundsickpeopleallthetime. Her

daughterwantedtobemoreintegratedintothecommunityandfeltinstitutionalized

inagrouphome. Thedaughteralsofeltthattherewasahierarchyamongstaffand

residents

under

which

the

residents

were

second

class

citizens

(for

instance,

staff

memberswouldnoteatwiththeresidents). Otherintervieweessharedaconcern

regardingthelackofempathyonthepartofstaff.

Anumberofintervieweescommentedontheextenttowhichresidentsweremadeto

feelwelcomeandstable. Somefamilymembersmadetheobservationthattheirloved

onesfeltuncomfortable,especiallyinapprovedhomes.Asoneintervieweeputit:

Whenhe

was

in

those

homes,

it

just

didnt

feel

like

his

house.

He

felt

he

was

imposing

on

them,

andifhewantedtocomeupstairsintheonehousetheTVwasupstairsshesaid,Well,I

guessyoucancomeup.

Thismanssonnowlivesinarentalhomewithafewothermenwhoalsohavemental

illness. Theirlandladyliveselsewhere,andtheyfeeltheycancallthehometheirown.

Theintervieweesaid:

Theyallhaveakeyandtheyreallresponsibletokeeptheplacelockedup,justlikeanytenants,

youknow?

Anotherwomansaidthatherdaughterwasuneasyaboutlivinginahousewherenew

peopleconstantlymovedinandout,assheseemedalwaystobelivingamong

strangers. Therewerealsoproblemsreportedwithdifferencesbetweenroommates,or

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25/58

withroommateswhohadabadinfluenceonothersintermsofencouragingdruguse

orthreateningothers.

THEME2:Suitableoptionsforrecreational,vocationalorpersonaltimeduringtheday.

Familymemberswereoftenconcernedthattheirlovedonesbeprovidedwithsome

structuretotheirdayandbegiventheopportunitytoenhancetheirsocialand

vocationalskillswheneverpossible. Dayprograms,suchasthoseofferedatthe

CanadianMentalHealthAssociation,werecitedasapositiveandstabilizingfactorin

somecases. Atthesametime,theywerealsosometimesconsideredinadequate. One

womancommented

that

her

daughter

found

her

day

program

boring

and

repetitive.

Otheroptionsfordaytimeactivitieswerelowstressjobsinsupportiveenvironments.

ApositivemodelofvocationalexperiencewastheoneofferedatProsperPlace

Clubhouse,wheremembersareinvolvedinsupervisedemploymentopportunitiesin

theClubhouseandinthecommunity. Thecommentwasmadethatsupervisioninsuch

temporaryworkallowedforreducedstressonthepartoftheworkingindividual,as

wellasawaytosupplementafixedincome. Someillindividualswerealsoabletohold

regularfulltimeorparttimejobsinthecommunity.

Assigningresidentschoresandresponsibilitiesinagroupenvironment,suchas

cookingamealforallresidentsonceaweek,wasoftenseenasaverypositive

requirement

that

built

life

skills

and

a

sense

of

responsibility,

hopefully

preparing

the

personforincreasinglyindependentlivingarrangements. However,itwasimportant

thatthiswasdonewithrespectforaresidentscapacitytoperformchoresandwith

supervisionorfollowupfromthestaff.

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26/58

Itwasmentionedseveraltimesthatinflexiblemealtimepoliciesinsomegrouphomes

andapprovedhomeswereunreasonable. Itwasoftenthecasethat,ifapersonwasnot

presentatthedesignatedmealtime,theywerenotgivenamealatall. Thisrestricted

anindividuals

freedom

to

go

out

and

about

and

was

problematic

for

those

whose

work

schedulewasirregular.

Bothillpersonsandtheirfamilymembershadstrongreactionsagainsttheapproved

homelockoutpoliciesunderwhichresidentsmustbeoutofthehomeforacertain

numberofhourseveryweekday.(Asimilarpolicyisinplaceathomelesssheltersand

receivedsimilarcomplaintsfrominterviewees.) Someresidentswereexpectedto

attenddayprogramsorwork,andotherswereexpectedtosimplyfindawarmplaceto

be. Asmentionedabove,opportunitiestoattendadayprogramorworkwereoften

positivefactors,howeveritwasconsideredinhumanetolockresidentsoutofwhatis

supposedtobehisorherhome. Oneintervieweewhowasdiagnosedwithdepression

andnotsleepingwellwasparticularlyupsettobeforcedoutontothestreetevery

morning.

Manyintervieweesagreedthatplannedrecreationalactivitiesweredesirable. The

intervieweesdaughterwhothoughtherdayprogramswereboringwasverypleased

withorganizedgroupactivitieslikebowling. Asanotherintervieweeputit:

Manyclientstheyrenotinclinedtogooutanddoaprogram,andiftheprogramisntthereand

organizedforthem,theyjustsit.

Oneintervieweewashopefulthatgrouphomestaffwouldactivelyencourageher

daughterto

participate

in

group

activities

because

the

daughter

liked

to

do

so

but

her

anxietyoftenpreventedherfromjoininginiflefttoherself. However,therewasa

differencebetweenprovidingresidentswithasenseofstructurethroughopportunities

fordaytimeactivitiesandforcingtheactivitiesuponthem,aswithlockouts:an

individualschoicemustbefactoredin.

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THEME3:Aharmreductionapproachtosmoking,drinkinganddruguse.

Adualdiagnosismentalillnesscoupledwithasubstanceaddictionisacommon

probleminthementallyillpopulation. Itseemedthatmanyifnotmosthomesforthe

mentallyillespouseazerotolerancepolicytowardsdrugsandalcohol,aprinciplethat

metwithmixedfeelingsfromtheinterviewees. Whilenoonewantedtheirlovedoneto

begiventheimpressionthatanaddictionwasacceptable,simplyevictingindividuals

whentheywerecaughtdrinkingorusingdrugswasnotviewedpositively. One

intervieweeactuallyfoughttopreventherson,whohadadualdiagnosis,frombeing

placedinahomewheredrugsanddrinkingwereacceptable:

weaskedifitwas[theplacementworkers]opinionthatifoursonwasplacedinahomelike

that,ifhewouldhavethestrengthtopullhimselfupandtogetoutofaplacelikethat,orifthat

wouldbetheendofhim. Itwasdifficultforherto,Ithink,comprehendasituationlikeourson

wouldbein,andIdontthinkshesawthatmuchhopeforhimandshedidnthaveany

alternativesuggestions.

Manyindividualsalsotalkedabouthavingbeenevictedforsmokingintheirrooms. In

onecase,thiswasnolongeraproblemwhenthepersonenteredagrouphomethathad

adesignatedsmokingroom.

Thebestprospectseemedtobeahomethatdidnotallowdrugsoralcohol,butwas

compassionateaboutanoccasionalslip,thatis,ahomethatespousedsomekindof

harmreductionstrategy. Oneintervieweetalkedaboutahomeatwhich,whenshesaw

evidenceofhersonusingmarijuana,shewasabletoinformthestaff,whothenmoved

himtoaroomthatwasclosertotheiroffice,therebyputtinginplaceapreventative

measure

that

worked.

FinalReport 24


28/58

THEME4:Encouragementoffamilyinvolvementandadvocacyinresidentslives.

Becausethefamilyisofteninthebestpositiontoknowtheneedsandlimitationsof

theirlovedones,cooperationbetweenfamilymembersandhousingsupportstaff

makesforoptimalcare. Howeverintheinterviewsitbecameclearthatinputoncare

fromfamilymemberswassometimeslessthanwelcome.Onewomanwastoldthatif

shedidnotstopcomplainingabouttheconditionsathersonsgrouphome,herson

wouldbeevicted. Sincehersonwasdifficulttohouse,shesimplyhadtostopspeaking

upforhim. Asanotherintervieweeputit:

Itsreallyhardtoknowwhentobackoffandnotinterfereandwhentostepinbecauseyoure

afraidfor

someones

safety.

Shetalkedaboutatimewhenhersonandhishousemates,whowerelivinginan

approvedhome,weresuddenlytoldthatthecaretakingfamilywouldbegoingaway

foramonth,sotheirresidentswouldhavetofindanotherplacetostayforthattime.

Theintervieweewasabletotakehersonintoherhome,butthesituationlefther

worried:

Theveryfactthatthishappenedsofastandthatwhatifoursondidnthaveanybodytofendfor

him?itappeared

that

the

other

gentleman

in

the

house

didnt

have

family

speaking

up

for

him

andwatchingoverhim.

Anotherintervieweestressedthatfamilyinvolvementwasparamounttoanillpersons

successinlivingoutsidethehome:

Ithinkonethingforsureisthattheyhavetohavefamilysupportortheyrenotgoingtodoit.

Healsostressedthatrelationshipsbetweenfamiliesandhousingsupportstaffcanwork

verywell:

Becausewegaveoursonalotofsupport,Ithinkwegotsupportbackfromthepeople[i.e.

medicalandsupportworkers]thathadtheabilitytogiveittous.

Manyintervieweesexpressedgratefulnesstoshelter,hostelandgrouphomestaffwho

kepttheminformedoftheirlovedoneswhereabouts,progressandcurrentcondition.

FinalReport 25


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CATEGORY4:HealthandSocialServices

THEME1:Coordinatedmanagementofcareservicesforthewholepersonprovidedby

understandingprofessionals

continuously

from

the

hospital

to

the

community

(and

back)

based

onneed.

Intervieweesreportedmanydifficultieswithgettingtheirillfamilymembers

diagnosed,intothehospital,andfromthehospitalintohousingwithanappropriate

levelofsupport. Equallyimportantwastheabilitytogetanilllovedonebackinto

hospitaluponrelapse,andmanycitedagoodpsychiatristwithwhomthefamilyhas

contactasthekeytosuccess. Apositivemodelofcooperationwasofferedinthecaseof

oneintervieweesson,whosesocialworker,landladyandpsychiatristwereall

constantlyincontactwithoneanotherandwiththesonsfamily. Ifthesonwasever

suspectedtobeexperiencingrelapse,thesocialworkerorthelandladywouldgetinto

contactwiththepsychiatrist,whowasabletogetthesonadmittedtothehospital.

Thepointwasbroughtupthatanindependentlylivingpersonwhohadmorefrequent

contactwithasocialsupportteam(anurse,psychiatristorothers)wouldlikelybeless

vulnerabletomoochers(seecategory3,theme1). Anotheraspectofcaringforthe

wholepersonincludedtreatingaconcurrentdrugaddictionalongwiththemental

illness(exploredaboveundercategory3,theme3).

Anadditionalpositivemodelofcarewasthatputforwardbyanintervieweewhoseson

wasapart

of

the

Edmonton

Early

Psychosis

Intervention

Clinic

(EEPIC).

This

intervieweehadexperienceddifficultytryingtolocateapsychiatristforhersoninthe

firstplace,andwasthenveryunhappywiththepsychiatristsshewasabletoget

becausetheyleftthefamilywithoutanadequateideaofwhattoexpectfromtheillness

FinalReport 26


30/58

orfromthemedications. WhenshewasreferredtoEEPIC,shesaidthedifferencewas

likenightandday. Sheexplainedasfollows:

EEPICseemedtodealwiththewholeperson[they]begantocreatebondsoftrustandsupport

andtheyknewhowfrightenedwewereandhowlittleweknewaboutthisdiseaseandthe

processwe

were

going

to

have

to

go

through.

They

supported

the

family

as

well

as

supporting

oursonthenverysystematicallytheybegantobuildup,firstofallbuildoursonupwiththe

medication,thehospitalspell,withthefollowup,theregularappointments,andthentheybegan

educatingallofusthentheybegantohelpwiththehousinginthebestwaytheycould.

Thisstoryunderscorestheimportanceofbuildingstabilityaroundtheillpersonbefore

puttingthemintoacommunityhousingplacement.

Oftenintheinterviews,patientswerereleasedfromhospitalbeforetheywerewell

enoughto

be

in

the

community,

which

ended

in

relapse

and

eventually

re

hospitalization,iftheywerelucky. Asoneintervieweesaidofherdaughter:

Ithinkthefirstthingthatwentwrongwasnotadequatehospitalizinginthefirstplace. Itsether

onkindofapatternofmoving,moving,moving.

Withnofollowupsupportatdischarge,herdaughterwascontinuallyfoundlivingon

thestreetsincitiesfarfromhome;herparentshadlittlechoicebuttotrackherdown

andbringherbackforherownsafetyeverytimethishappened. Noncompliancewith

medicationwasalsooftencitedasareasonforabreakdowninhousingstability. When

housesbecamemessyorrentwasnotpaid,oftentheillpersonhadstoppedtakinghis

orhermedication. Thiswasasituationthat,insomecases,mayhavebeenprevented

withsupervisionandsupportfromanetworkofcaringindividuals.

Ashelpingprofessionals,thepolicearealsoexpectedtoadoptanunderstanding

attitude

when

dealing

with

the

mentally

ill.

More

than

one

respondent

had

kind

things

tosayaboutthewaythepolicehadtreatedthemortheirlovedone. Oneyoungman

whowaspickedupandtakentoAlbertaHospitaldescribedthepolicemeninvolvedas

reallyniceguys. Ontheotherhand,anotherintervieweewhohadspenttimeliving

onthestreetsdescribedbeingverballyabusedbyapolicemaninreferencetohismental

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31/58

illness. Hewasalsochargedwithloitering,andbecausehedidnothaveahometogo

to,hefeltthischargewasunjust.Thissamerespondentalsomadeallegationsof

physicalabuseandfalseaccusationsbybothpoliceofficersandsecurityguards.

THEME2:Sufficientlegalmechanismsforfamilyinterventiontopreventdeterioration.

Illpersonswereoftensurvivingonaverylowfixedincome,aproblemexacerbatedby

thefactthatmanyindividualswereunabletoproperlymanagetheirmoney,especially

incasesofdualdiagnosiswhenrentmoneywasliabletobespentondrugsoralcohol.

Therefore,anapplicationforeitherpublicorprivatetrusteeshipwasoftenpursuedfor

thebenefit

of

the

ill

person.

The

possibility

of

trusteeship

was

arelief

to

many

concernedfamilymembers.

Goingtocourttogetalovedonecommittedtohospitalwasmentionedbyfamily

membersasawelcomeoptionforgettingalovedoneintonecessarytreatment. Since

compliancewithmedicaltreatmentisasignificantstabilizingfactor,onewoman

expressedreliefthatherdaughternowlivedinanotherprovincewithcommunity

treatmentorders. Thecommunitytreatmentordermandatesthatthedaughtercanbe

releasedfromthehospitalontheconditionthatshecontinuestotakehermedications.

Ifshefailstodoso,shewillbereadmittedtothehospital. Hermothersaid,atleast

rightnowIknowthereareseveralpeoplekeepinganeyeonher. Thedaughter

herselffindsthesituationsatisfactory,asthearrangementallowsherthefreedomto

liveindependentlywithfrequentbutrelativelylittlemonitoring.

Guardianshipwasalsoconsideredbeneficialforfamilymembersofanillperson. One

intervieweehadasonwhoagreedtoliveatagrouphomebutrefusedtosignthe

properdocumentationbecauseofhisparanoia. Aslegalguardian,however,hisfather

wasabletosigninhisstead.

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CATEGORY5:AdditionalConcerns

Theme1:Highdemandforhousingwithfewoptionsandlongwaitinglists.

Thehighdemandforappropriate,affordablehousingforthosewithmentalillnesswas

mentionedincidentallyandimplicitlythroughoutthisstudy,andsupplyisclearly

lacking. Peopledescribedyearslongwaitinglists,especiallyforCRHCprojects. Alack

ofhousingchoiceleavesthosewhoalreadyhavehousingandsomelevelofsupport

feelingtrappedinsituationsthattheyconsiderlessthanadequate. Asoneinterviewee

whowasunhappywithhercurrenthousingarrangementputit:

Theresnothing

we

can

do

about

it.

They

just

say,

move

out

and

find

another

place

but

we

cant! Wejustcant.

WithEdmontonsboomingeconomyandtherisingcostofhousingforpeoplein

general,thisproblemisexpectedtogetworse.

Theme2:Familyisforcedtointervene,resultingincaregiverstressandburnout.

Parentsexpressed

extreme

anxiety

as

to

how

their

ill

loved

one

will

survive

once

the

parentspassaway,andwithgoodreason:persistentinterventionfromfamilymembers

wasoftencitedastheonlyreasonilllovedoneswerenotlivingonthestreet. Parents

providedsignificantfinancialsupport,andoftentheparentalhomewastheonly

alternativetohomelessnesswhenanillpersonwasevictedorunabletocopewitha

housingsituation. Livingathomewasrarelyanidealoptioninthesecasesasthe

parents,manyofwhomwereelderly,wereunabletoprovidesufficientsupportand

managedifficultbehaviours. Onewomanwasfortunateenoughtobeabletotake

severalmonthsofffromworktocareforherson,whohadadualdiagnosis,whenhe

wasreleasedfromhospital. Shefeltthathercarewasindispensable:

[Itwas]absolutelynecessarytohelpmysonmaintainthestabilityhegainedinthehospitalsoI

actedasawatchdogandprotectorandkepthimfromharmandforthenumberofmonthsthat

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33/58

hewasathome,ImadesurethathegottoallofhisappointmentsandIjustwatchedoverhim.

AndIcannotimaginewhatwouldhavehappenedto[him]ifIhadntbeenthereorsomeone

hadntbeenthereinmyplace.

Evenifapersonwasabletoprovidecareforasicklovedone,thestresswasoften

overwhelming.One

woman

talked

about

the

abusive

language

that

was

one

manifestationofhersonsillness:

TherewasnowayIcouldhavehimlivewithme,becauseIcouldntoperatethatwaywhenyou

havesomebodybeingsick,andtheyrebeingpassiveorpeacefulorquiet,youcandoanything

forthem,butiftheyreattackingyouverbally,[expletive]!

Unfortunately,caringforpassiveandquietindividualscanbeequallychallenging. One

intervieweedealtwithasonwhoatonepointspentmostofhistimeinafetalposition.

Hehad

to

wrestle

him

into

the

car

to

get

him

to

the

hospital.

This

individual

jokingly

describedthestressthatoverwhelmedhimanothertimewhenthehospitalwasgoing

toreleasebothhiswife,whowasalsomentallyill,andhissontohiscare:

Icouldntfigureatthetimehavinghercomebackinthestateshewasin. Mysonwasntvery

goodeitheratthattime,soIsaidwell,thattheycouldhavethehouseandlookafteritandId

leave!

Thehospitalthereforekepthiswifeandsonforfourmonthslongerthanintended,and

hiswife

was

eventually

placed

in

anursing

home.

The

interviewee

speculated

that

the

moneyspentonkeepingtwoofhisfamilymembersinthehospitalforthatperiodof

timecouldhavebeenmoreefficientlyspentonsupportedhousing.

Evenfamilieswhoconsideredtheirsasuccessstorythatis,thosewhoseemedto

havefoundastable,longtermhousingsolutionfortheirilllovedoneworriedabout

whatmighthappenshouldthesituationchangeforthehousingprovider. They

expressedanxietiesabout,forexample,thecompassionategrouphomeownerwho

neverthelesswontdothisforever. Familieswhowereabletobuytheirlovedonea

permanentprivateresidencewereforthemostpartstillunwillingtodoit,astheyhad

anxietiesovertheirlovedonenotreceivingsupportsufficienttomaintaintheminthat

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home. Theywerealsoconcernedabouttheirlovedonesabilitytotakecareofthe

property. Further,AISHplacesrestrictionsonassetsandinvestmentincome. Such

restrictionsmakesettinguptrustsanineffectivestrategyforfinanciallysupporting

lovedones

after

parents

pass

away.

Theme3:Publicmisperceptionofmentalillnessandhomelessness.

Theamountofstigmaattachedtoadiagnosisofmentalillnessishardtooverestimate.

Oneintervieweeputitwell:

Thedifficultyinhousingismoreinmanypeopleadifficultywithacknowledgingthefactthat

theydohaveaproblem. Ifyouhaveabrokenleg,itsprettyobviousyouregoingtogotothe

doctorand

get

asplint

and

wear

crutches.

Theres

no

stigma.

But

if

youre

[mentally

ill],

then

thereisatremendousstigma.

Theintervieweessonrefusedtreatmentforalongtime. Afterheacceptedtreatment,

hestillwentoffhismedicationsregularly,oftenleadingtobehaviorsthatcaused

evictions. Anotherintervieweelamentedthefactthatfriendswereevictedforstrange

behavior:

Thelandlordjusttellsthemtogetlostinsteadofseeingitasanillnessandtryingtobe

compassionate.

Healsomentionedstigmainreferencetogettingajob:

Fromthattimeon[afterbeingreleasedfromhospital],Iwasvolunteeringallthesedifferent

places. Buttheyrewondering,whyishevolunteering?Hes40anddoesnthaveapayingjob?

SoIwouldgofromplacetoplaceandnoonewouldhireme.

Whenthismanwasfinallyabletofindafulltimejob,hewentoffincomeassistance

andwasabletoliveindependently.

Theme4:Difficultiescausedbythenatureofmentalillnessanditstreatment.

Mentalillnessproducesdisorderedthinkinginanindividualaswellasapropensityto

isolateoneself,neglectselfcareandsometimesattemptsuicide.Thismeansthat

individualsoftencannottakecareofthemselves,letalonetheirlivingspace. The

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numberofevictionssimplyduetomessinessfoundintheseinterviewsatteststothis

issue. Anosognosia,oralackofinsightintoonesownmentalstate,isasymptomthat

precludesselfcareentirely,andoftenleadstoillindividualsrefusinghelpfromthose

whohave

their

best

interests

at

heart

because

they

do

not

believe

that

are

ill

in

the

first

place. Theparanoiathatsometimesaccompaniesthisillnesshasasimilareffect,asill

personscanbelievethattheirlovedonesarepurposelytryingtoharmthem.

Medicationsposeanotherdifficulty,astheycanhavedistressingsideeffects,andit

sometimestakesmonthsorevenyearstofindtherightcombinationofmedicationsand

dosagelevel. Allthesethings,alongwiththestigmaofhavingtotakemedicationfora

mental

illness,

contribute

to

non

compliance.

Individuals

stop

taking

their

medication,

whichoftenleadstopsychoticrelapseandtheneedforfurtherhospitalization. Even

withoptimalmedicaltreatment,illpersonsareliabletohaverelapsesthatsendthem

backintothehospital. Someintervieweestalkedaboutthestresscausedwhentheir

lovedoneenteredthehospitalduetorelapseandhisorherlivingspacewasrentedto

someoneelse. Appropriate(andscarce)housingarrangementsweretherebylostto

them.

Theme5:Fewoptionsforthehardtohouse.

Asubcategoryofmentallyillpersonsfinditespeciallyhardtolocate(andkeep)

housingbecauseofdifficultiestheyfaceinadditiontothesymptomsofmentalillness.

Examplesinourpoolofintervieweesincludedthosewithdrugoralcoholaddictions

(dualdiagnosis),violenttendencies,andcriminalrecords,aswellaspersonswhowere

extremelylowfunctioning(anddidnotqualifyforgovernmentprogramsthatprovide

comprehensiveservicesandfundinglikePDD)andthosewhorefusedtoseekmedical

treatment. Thesepeopletendedtobeevictedfornotfollowingtherulesintheir

housingarrangement,ortheywererefusedhousingaltogether.

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Theme6:Innovativemodelsofsupportivehomeownership.

Intermsofnovelideasforhousinginitiatives,oneintervieweewonderedwhatitwould

belikeiffamilymembersgottogethertoopentheirowngrouphome,sharingthecost.

Anotherintervieweetalkedaboutanewhousingprojectunderwhichanolderbuilding

hasbeenconvertedintoanassistedlivingresidencefordisabledpeople. This

inclusivecommunityisopentopeopleofallagesandalldisabilities,including

peoplewithmentalillnesses. Ithasonsitemedicalsupportservicesthatareflexible

accordingtoneed,andthefacilityitselfincludesapool,agym,acraftroom,andan

auditorium. Themostexcitingpartfortheintervieweewastheattachmentbeingbuilt

ontotheexistingfacility,whichwillbemadeintocondosthatfamiliescanbuy. Forthis

interviewee,thepossibilityofapermanenthomewithsupportswasourdreamcome

true. Icouldntbelieveanythingcouldbethatperfect.

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IV.DiscussionDiscussionofData

Mentallyillpersonsandtheircaregiversexperiencealitanyofdifficultiesincoping

withtheirdaytodaylives. Stable,longterm,affordablehousingcomesout,asone

intervieweeremarked,onthetopofeverybodysworrylist. Itisalsoclearfromthe

findingsthatthequalityandlevelofsupportprovidedtoresidentsmustbeconsidered

anintegralpartofthehousingproblem.

Firstly,it

is

clear

that

the

amount

of

financial

assistance

given

to

those

with

mental

illnessmustberevisitedifthehousingsituationinEdmontonistoimprove. Vulnerable

illpersonsareoftennotprovidedwithanincomesufficienttoescapeinnercityhousing

orhousingthatisinillrepair. Buthavingthefinancialabilitytoliveinanicepartof

thecityisnotenough. Supportsmustbeinplaceaswell. Moniesavailableforthe

supportofotherdisabledgroupsofpeople,suchasseniorsinnursinghomesandthose

with

developmental

disabilities,

seem

to

significantly

outstrip

monies

available

to

supportthosewithmentalillnesses. Thisisanareathatshouldbeaddressed.

Theneedforprovisionofanadequate,flexiblelevelofcareisprobablythestrongest

overallthemethatemergedfromtheseinterviews. Throughoutthedatacollection

process,individualsapologizedforramblingorgoingofftopicwhendetailingthe

trialsoftheirownortheirlovedonesillness.But,asonemancommented,

toforget

about

the

illness

and

just

talk

about

housing

doesnt

work.

Its

all

wrapped

up

together.

Symptomsofillness(andrelatedissuessuchasaddictionsandnoncompliance)vary

widelyamongstthosediagnosedwithmentalillness,aswellaswithinthesame

individualatdifferenttimes. Thismeansthatavarietyoflevelsofsupportand

flexibilitywithineachindividualscareprogramisnecessarytohouseillpersonssafely

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andhappily. Thosewhoworkwithandcareforthementallyillneedtobeadequately

trainedandattentivetotheindividualneedsoftheirclients. Asthefamilyisoften

afraidtocomplainaboutinadequategroupandapprovedhomeconditionsduetoa

perceivedlack

of

other

options,

areview

of

government

policy

for

this

kind

of

housing

seemsnecessary. Patient,persistentandpersonalinterest,fromfamilymembersand/or

veryspecialsupportandhealthworkers,oftenmadeallthedifferencewhenitcameto

keepingillindividualsinhousingandoffthestreets. Therefore,theencouragementof

familyinvolvement(throughlegalmechanismswhereappropriate),andanetworkof

carethatbridgesfamily,supportworkersandmedicalworkerswouldbeideal.

Whenitcomestosupportservices,thereissometimesathinlinebetweenallowingfor

illpersonsindependenceandfailingtoprovidethemwithenoughsupport. Again,

individualizedattentionandassessmentiscritical. Residentsmustbemadetofeel

welcome,begivensocialandrecreationalopportunities,andtreatedlikeadultswith

varyingabilitiestocopewithdailytasks,notchildrenorsecondclasscitizens.

However,itmustalsoberecognizedthatmanypersonswillcontinuetoneedagreat

dealof

assistance

for

day

to

day

living.

While

skill

building

is

plainly

preferable

to

warehousing,thegoalsofskillbuildingmustbeinkeepingwiththeindividuals

ultimatecapacity,whichwilloftenremainlimited. Teachingindividualstocook,clean

anddotheirownlaundrywasseenasapositiveinitiativewhereappropriate,but

failuretoprovidetheseserviceswhereneededoftenmeantthefailureofthehousing

arrangementasawhole. Whiletransitionalhousingwasseenasanexcellentidea,

more

care

and

sensitivity

to

diverse

needs

must

be

exercised.

One

of

the

survey

respondentsputitforcefully:

Afterbeingletoutofthehospital,andfindingagrouphome,wehavefoundthelackofsupports

putinplaceareinexcusable. Howdoesoneexpectsomeoneinthisframeofmindtofollowup

themselveswithappointmentsandmedications? Thetransitionperiodfromhospitalto

wherevertheyresidetobecomeindependentissuchafragileperiod,ifitsdonefastthe

individualwindsupinthecycleagainhospital/streets/orworse.

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Thecyclicalhousingpatternmentionedhereisalsoevidentintheintervieweeshousing

chronologies(seeAppendixC).Itwasfoundthatillpersonswithoutanadequatelevel

ofcareoftendesertedtheirlivingarrangements,wereevictedand/orwerevulnerableto

thosewhowouldtakeadvantageofthem.

Finally,itmustbeacknowledgedthatsomepersonswithmentalillnesswillbeharder

tohousethanothers. Symptomsofillnessandcompliancewithtreatmentwillvary

frompersontopersonand,toanextent,withinthesamepersonatdifferenttimes.

Someillpersonswillhaveadditionalproblemswithviolence,criminalrecords,and

addictions.These

problems

can

lead

to

behavior

that

is

difficult

for

caretakers

(both

professionalsandfamilymembers)todealwith,leavingsomeillpersonsin

increasinglydesperatesituationsastheyareevictedorrefusedhousing. Inthesecases

acompassionate,harmreducingapproachinahomewithpatient,welltrained,

rotatingstaffwouldprovideanalternativetohomelessness. Ironically,whilebeing

wellenoughtoliveinrelativeharmonywithcaregiversandhousematesoften

determinesonesdegreeofhousingstability,havingastableandsupportiveliving

arrangementisalsoarequirementforbecomingwell. Afterreadingadraftofthis

report,oneintervieweeaptlycommented:

Beinginastablehousingsituationthatwilllastisparamounttowhetherornotapersonwillget

well,takemeds,etc. Ifhehastoworryabouthavingaroofoverhishead,hewontbe

concentratingongettingwell.

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Conclusion

Itisexpectedthattheresultsofthispreliminaryprojectwillleadtofurther,more

extensiveinformation

gathering

initiatives

involving

multiple

players.

The

ultimate

goalofSSAEdmontonistodevelopaprojectthatwoulddirectlyhelppersonswith

mentalillnessfindsuitablehousingwithappropriatesupports,eitherthroughacapital,

socialservice,oradvocacyinitiative.However,determiningthebestpathtotakeinthis

regardrequiresmuchmoreintensivestudyoftheissuesarisingfromthisresearch.

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Appendix A Survey

HONORARY PATRONS

Senator Tommy Banks

Dr. Brian Bishop

Dr. Roger Bland

Dr. Alan Gordon

Myer Horowitz

Yardley Jones

Diane Jones Konihowski

Jan Reimer

Justice Wm. Stevenson

January 17, 2007

Dear Friend,

The SSA, Edmonton & Area Chapter has received financial support from the EdmontonJoint Planning Committee on Housing to do some preliminary research on theexperiences of persons living with mental illness, and their family members, in findingappropriate housing. We need your help with this.

The short survey included with this letter will give us a starting point from whichwe can begin to actively address the housing problem in Edmonton.

Because every one living with mental illness has different experiences related to housing

(some find it easily, others have a really hard time), we need to learn more about what isneeded out in the community. This is why we want to know about your experiences.

If you are a person with mental illness, we need your first-hand knowledge of the housingsituation in our city. If you are a family member, we want to hear about your experiencestrying to find (or help find) housing for your loved one with mental illness. Please mailyour completed surveys to us using the prepaid envelope by February 9th.

We will follow up the survey with interviews with willing participants. These interviews willallow us to get into the details regarding peoples experiences so we can betterunderstand the realities of finding housing when dealing with mental illness. We hopeyou will choose to help us further by participating in an interview. A small

honorarium will be provided as a token of appreciation.

This short research project which needs to be finished by the end of March 2007 isbeing conducted by Tara Koehler, Program Coordinator. She will be assisted by GiriPuligandla (Executive Director) and Carla Semeniuk, M.Urb.Pl. (Board member andHousing Committee Chair), in addition to our invaluable core of Edmonton Chaptervolunteers.

We have been talking about a housing project for some time now: your contributions tothis research phase will help shape it and ensure that it is based on what is really neededby our people.

Thank you in advance for any help you can provide in this research project. If you haveany questions about this project or the survey, please contact Tara by calling 452-4661 oremailing [email protected].

Yours sincerely,

(originals signed)

Giri Puligandla,Executive Director


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SSA Edmonton & Area Chapter Member Housing Survey

If you are a person with mental illness please answer this survey based on your own experience. If you are a

family member of a person with mental illness, please answer the survey in regard to your loved one who is ill.

INSTRUCTIONS: Please answer the following questions by circling Yes or No, or by putting a

check in the appropriate box. Note that loved one here refers to a loved one with mental illness.

Have you been diagnosed with a mental illness? Yes / No

Are you a family member who feels responsible or provides any support for a loved one with mental illness? Yes / No

Do you (or does your loved one) receive income support or a pension due to a diagnosis of mental illness?

Yes / No

When were you (or when was your loved one) diagnosed?

less than 5 years ago 5 to 10 years ago more than 10 years ago

What is your (or your loved ones) gender? male female

What is your (or your loved ones) age category? under 25 25-40 41-55 over 55

INSTRUCTIONS: Please answer the following questions by circling

your answer and/or by checking the appropriate box. Note that

loved one here refers to a loved one with mental illness.

Please use this space to write any

comments you may have about

these questions.

Do you (or does your loved one) have a place to live that is expected tobe long-term or permanent?

Yes / No

If you answered yes to the question above, do you think that

this housing meets your needs (or the needs of your loved one)?

Yes / No

Is more than 1/3 of your (or your loved ones) income spent on housing?

Yes / No

Have you (or has your loved one) ever had trouble finding satisfactory

housing?

Yes / No

If you answered yes to the question above, what was thetrouble in finding housing? (please check all that apply)

I didnt know where or how to start lookingI figured out where to look for housing, but the process was too

long, difficult or confusing

Waiting lists for what I wanted were too long

I couldnt afford the place I wanted

I couldnt get the supports I needed at the place I wanted

Other (please explain in the box provided to the right, or on the

Additional Comments sheet provided)

please turn over

Appendix A i


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Have you (or has your loved one) used any of the following in the last 10

years? (Circle Yes or No. Then check the boxes that describe your

[or your loved ones] living arrangement at the current moment.)

Group home Yes / No currently

Emergency shelter Yes / No currently

Continuing care (nursing) facility Yes / No currently

Hospital (longer than 2 months) Yes / No currently

Rental assistance or subsidy Yes / No currently

Subsidized public housing Yes / No currently

Supportive housing Yes / No currently

Housing that you own Yes / No currently

Regular rental unit (shared) Yes / No currently

Regular rental unit (not shared) Yes / No currently

Family home Yes / No currently

Transitional (hospital community) housing Yes / No currently

If youve used anything not listed

to the left, please tell us about it in

this space or on the Additional

Comments sheet provided.

How strongly would you agree or disagree with the following statementsabout your (or your loved ones) current housing?

This housing is in a nice neighbourhood.

This housing provides ready access to

transportation services (bus, LRT, etc.).

This housing offers ready access to

amenities like grocery stores.

Health care is reasonably accessible.

This housing is reasonably near to leisure

or recreational facilities.

Have you (or has your loved one) ever been homeless, that is, lived onthe streets?

Yes / No

Please use the Additional Comments sheet provided to write out anything else you would like to sayabout housing for persons with mental illness in Edmonton. Then put the survey and your Additional

Comments sheet into the envelope provided and drop it in the mail. Prompt replies are appreciated!

1 2 3 4 5(disagree) (agree)





THANK YOU FOR PARTICIPATING IN OUR SURVEY!

Would you agree to participate in a 60-90 minute interview about housing for persons with mental illness in

Edmonton? If yes, please write your name and phone number on this line:

A small honorarium will be given for your participation in an interview.

Appendix A ii


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Appendix B - Survey Results

Have you been diagnosed with a mental illness?

Yes 45% No 55%

Are you a family member responsible for a person diagnosed with mentalillness?

Yes 78% No 22%

Do you (or does your loved one) receive income support or a pension due to adiagnosis of mental illness?

Yes 93% No 7%

When were you (or when was your loved one) diagnosed?

less than 5 years ago 5 to 10 years ago more than 10 years ago16% 22% 62%

What is your (or your loved ones) gender?

male 75% female 25%

What is your (or your loved ones) age category?

under 25 25-40 41-55 over 559% 38% 42% 11%

Do you (or does your loved one) have a place to live that is expected to be long-

term or permanent?

Yes 71% No 29%

*If you answered yes to the question above, do you think thatthis housing meets your needs (or the needs of your loved one)?

Yes 79% No 21%

Is more than 1/3 of your (or your loved ones) income spent on housing?

Yes 61% No 39%

Have you (or has your loved one) ever had trouble finding satisfactory housing?

Yes 64% No 36%

Appendix B i


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*If you answered yes to the question above, what was the trouble infinding housing?

- I didnt know where or how to start looking. 27%

- I figured out where to look for housing, but the applicationprocess was too difficult or confusing.. 20%

- Waiting lists for what I wanted were too long.. 31%

- I couldnt afford the place I wanted... 32%

- I couldnt get the supports I needed at the place I wanted 24%

Have you (or has your loved one) used any of the following in the last 10 years?

Group home... Yes 34% No 66% Currently 66%

Emergency shelter... Yes 28% No 72% Currently 1%

Continuing care (nursing) facility. Yes 10% No 90% Currently 6%

Hospital (longer than 2 months) Yes 54% No 46% Currently 4%

Rental assistance or subsidy..... Yes 31% No 69% Currently 16%

Subsidized public housing.. Yes 15% No 85% Currently 12%

Supportive housing.. Yes 20% No 80% Currently 8%

Housing that you own..... Yes 26% No 74% Currently 14%

Regular rental unit (shared) .. Yes 26% No 74% Currently 6%

Regular rental unit (not shared) ... Yes 45% No 55% Currently 14%

Family home. Yes 61% No 39% Currently 28%

Transitional housing.... Yes 23% No 77% Currently 5%

Have you (or has your loved one) ever been homeless, that is, lived on thestreets?

Yes 25% No 75%

Appendix B ii


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How strongly would you agree or disagree with the following statements about

your (or your loved ones) current housing?

This housing is in a "nice" neighbourhood.

0

5

10

15

20

25

30

35

40

1 (disagree) 2 3 4 5 (agree)

Level of Agreem ent

N

umberofRespondents

This housing provides ready access to transportation services

(bus, LRT, etc.)

0

5

10

15

20

25

30

35

40

4550


Level of Agreement

NumberofRespondents

Appendix B iii


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Health care is reasonably accessible.

0

5

10

15

20

25

30

35


Level of Agreement

NumberofRespondents

This housing offers ready access to amenities like grocery

stores.

0

5

10

15

20

25

30

35


Level of Agreement

NumberofRespondents

Appendix B iv


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This housing is reasonably near to leisure or recreational

facilities.

0

5

10

15

20

25

30

35


Level of Agreement

N

umberofRespondents

Appendix B v


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Appendix C - Housing Chronologies

The following maps briefly summarize each interviewees housing experiences, and are pr

to capture the range and number of housing situations experienced by persons with me

Interviewee #1

group home independentapartment

hospital street / hostel group home appro

transitional housing hospital

- extended stay

group home group home

- increased independence

- periodic hospital stays

Interviewee #2

independent

home- owned by family

independent

home

hospital

- briefly discharged

- readmitted

transitional housing assisted living a

- evicted (paranoia

independent

apartment

independent

apartment

independent

apartment

independent

apartment

independ

apartme

- owned by friend

- evicted (mess)

- owned by friend

- evicted (mess)

- left after 1 week - evicted (mess) - under eviction

Interviewee #3

- goes from city to city

and leaves country

group home relatives

home

streets

parents home

- discharged before well

hospital - l

brief stays in

hospital

independent

apartmenthospital independent

apartment

hospital


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Interviewee #4

shelters/

missions

hospital half-way house

- evicted for smoking

group home group home

- evicted for making complaints

h

- trouble locating group

home due to criminal record

group home

Interviewee #5

hospital room & board parents home independent

house- owner closes home down

- rents from landlord whoalso has mental illness

Interviewee #6

group home independentapartment- evicted (drug use)

hospital streets

brothers home mothers home

- afraid to leave individual at

home alone.

grandmothers

home

fathers homemothers home

- evicted (causing

disturbance)

- periodically runs away from hospital, comes back

- also picked up by police and brought back


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Interviewee #7

hospital parents home transitional housing approved homes parents h

- little supervision

- not taking meds- mother takes extended leave

from work to care for child

hospital parents home group home shelter parents home

- evicted (smoking in room) - qualifies for PDD fund- substance abuse

recovery program

Interviewee #8

room & board parents home hostels / missions

- travels, eats in soup kitchen

independent

apartment

hospital

hospitalshared accommodation

/ group homes

transitional

housing

approhospital

hospital group hom

Housing for Persons With Mental Illness

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