Working In Person Centred Ways - Family & Community Services

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Working in Person Centred Ways:A Resource Book for NSWAdvocacy and Information ServicesOctober 2011Family &Community ServicesAgeing, Disability & Home Care

Judith Ellis, Jane Sherwin and Trudy van Dam. Working in Person CentredWays: A Resource Book for NSW Advocacy and Information Services.Ageing, Disability and Home Care, Department of Family and CommunityServices.978-0-9872142-0-1This publication was funded by Ageing, Disability and Home Care,Department of Family and Community Services. Ageing, Disability and Home Care & The Consortium for PersonCentred Approaches, 2011.Except as provided by the Copyright Act 1968, no part of this publicationcan be reproduced, stored in a retrieval system or transmitted in any form,or by any means without the express permission of the authors.Ageing, Disability and Home CareDepartment of Family and Community ServicesLevel 5, 83 Clarence StSydney NSW 2000Tel: 02 8270 2000www.adhc.nsw.gov.au

The AuthorsJudith Ellis has over 30 years experience in social advocacy, systemsadvocacy, leadership development and service development in Englandand Australia. She was the director of a state wide advocacy agency forover 11 years and has worked in independent advocacy for most of herworking life. Judith is known across Australia for her work with families ofpeople with developmental disability, for influencing the direction of policy,and for her organisational change credentials.Jane Sherwin has been involved in the lives of people with disability sincethe late 1970s in a range of service roles and as an academic. Jane wasDirector of a Queensland capacity building service that was funded as aninformation service for 7 years. She works with groups and organisationson values-based quality, person-centred approaches and leadershipdevelopment, services and supports.Trudy van Dam is an academic working in the area of inclusive educationand disability studies at the Australian Catholic University. She has 20yearsw experience in service provision, ten as the CEO of a large serviceprovider. Over that time she has been responsible for implementingsustainable person-centred approaches which have brought significantchange to the lives of people with disability.

ContentsIntroductionWhy work in person centred ways?What does it take?5Definitions7The elements of a person-centred approach8The needs of a personLife in, and with, ordinary communityMy life, my sayPositive beliefs and expectationsPartnershipsPlanning and supportEnabling structures and relationships

IntroductionIn 2010/11 Ageing, Disability and Home Care made a commitmentthat advocacy and information providers would have the opportunity toexamine the implications of person-centred approaches for their services.The commitment relates to the NSW Government’s Stronger Together2 reform of the disability service system, which will give people witha disability more control over their lives, including how the specialistdisability system supports them.To progress reform, the NSW Government has allocated more than 141million over the next five years for decision support resources, includinginformation, planning, advocacy, case management and service brokers.This resource book was developed following a workshop in June 2011for representatives of advocacy and information services in NSW. Insupplementing learning from the workshop, it is designed to:npromote a greater understanding of person-centred approachesby these servicesnassist them to examine their work with service providersnprompt reflection on the implications for their work.Publication of the resource book is a step towards bringing people witha disability to the centre of decision-making about their lives today and inthe future. This approach, which is has been internationally recognised,is particularly relevant for people from culturally and linguistically diversebackgrounds and those of Aboriginal and Torres Strait Islander descent.Ageing, Disability and Home Care will be consulting extensively withpeople with a disability, their families, carers and service providers andother stakeholders about the implications of person-centred approachesfor service delivery, including the changes needed to personalise support.

Why work in person centred ways?Person centred approaches help people get better lives. An advocacyservice can advocate for this. An information service can inspire people tohave this. Both advocacy and information services can influence disabilityand other services to work in person-centred ways.Person centred approaches can mean that people with disabilities havebetter lives. That means having:na real homena meaningful weeknpurposenfamily, friends and acquaintancesngrowth and self developmentnsocial groups to belong tonpeople treat you as an individualncontrol over the direction of one’s life and futurengood healthna belief systemnsafety, security and justice4 n Working in person centred ways

What does it take?International literature 1 and the experience of practitioners, families andpeople with a disability indicates that significant and positive changes tothe lives of people with a disability are more likely to come about when:nnnnnSpecialist disability services are willing to review their own practices andfocus on the future, not the past. They place more importance onoffering beyond current practices and tailoring supports to meet theneeds of individuals, instead of fitting the person into what they havedone in the past.There is strong leadership driving the service to change its values andthe way it thinks about bringing individuals and families to the centre ofdecision making about their own lives and futures.There is knowledge and information available about person centredapproaches. There is agreement that all parts of a service need tobe involved in the changes to practice that result from implementingperson centred approaches. This ensures that there is not just asuperficial adoption of person centred approaches but provideseveryone in the organisation with the skills needed to change the waythey have traditionally responded to people with a disability.There is a genuine partnership with people with a disability and families.The service encourages individuals and/or families to own their futuresand goals and the service works to make sure that the person’s plansfor their future are translated into action.There is a commitment to change the ways that funding is used,to seek different forms of funding that provide greater opportunity toimplement person centred approaches, and to work to transform blockfunding into flexible individualised funding.Implications for NSW Advocacy and Information Services n 5

“In order to support the kinds of community changes necessary toimprove people’s chances for a desirable future, virtually all existinghuman service policies and agencies will have to change the ways theyregard people, the ways they relate to communities, the ways they spendmoney and the ways they define staff roles and responsibilities.” 2Advocacy and information services are crucial to ensuring that peoplewith a disability can make life decisions which reflect their individualidentities, interests and needs. This role involves direct advocacy with,and for, them at service provider and broader systemic levels. It alsoentails providing relevant and accessible information about the disabilityservice system and about what is possible in their lives.Ellis. J., Sherwin, J., van Dam,T., (2008) Person Centred Planning: A review of theliterature, Department of Ageing Disability & Home Care1Valuing People – A New Strategy for Learning Disability for the 21st Century – Guidancefor Implementation Groups http://valuingpeople.gov.uk2

DefinitionThe term “person-centred approach” is best explained by looking at whatit means for both people living with a disability and what it means for theorganisations providing services to them and their families.Person-centred approaches give people with a disability:nvalued rolesnparticipation and belonging in the communitynfreely given relationshipsngreater authority over decisions about the way they livenngenuine partnership between the service, themselves and/or their familyand alliesindividualised and personalised support arrangements.Person-centred approaches require that organisations:nnnnnnhave a committed leadership that actively instils the vision of a personcentred approach at all levelshave a culture that is open to continual learning about how toimplement a person-centred approachconsciously hold positive beliefs about people with a disability and theirpotentialdevelop equal and ethical partnerships with people with a disability andtheir familieswork with people to individually meet each person’s needs so that theycan be in valued roles in valued settingsdevelop appropriate organisational structures and processes

The elements of a person-centred approachThe following sections explore the seven elements of a person-centredapproach:1.The needs of each person2.Life in, and with, ordinary community3.My life, my say4.Positive beliefs and expectations5.Partnerships6.Planning and support7.Enabling structures and relationships.Each section highlights potential challenges for advocacy and informationservices. They also include reflection questions to help services considertheir work practices.How the elements fit togetherWorking to help people with a disability experience a good life througha person centred approach starts with understanding and meeting theneeds and wishes of the person so that they experience a life in and withordinary community. This is an ordinary life where they have authorityover their life and support arrangements. Having an ordinary life in andwith community and having authority over their lifestyle and supportarrangements should be the outcomes of a person centred approach.Achieving this requires all people to hold positive beliefs and expectations.Crucially, it requires services to work in partnership with individuals andtheir families/allies. Planning and support needs to be individualised andbased on an individual’s needs and hopes for valued roles. For personcentred approaches to work, organisations need to develop enablingstructures and relationships.

Life in, andwith, ordinarycommunitydsupedndanin dgu a lizciv i dti oeexpthli e f swibeandendi rs hiivilsa p bb i l i e t w e e n p e o p l ev i c e sty/farpoam ili e s a n d s ertdeth aasbt islesneeds-based, roEnabipshli n gsio ns tr u ctures and relatrt ningPaetaiti vPla n nPosThe needsof thepersonnsMy life, my say

The needs of each personWhat this is aboutUnderstanding and responding to people’s immediate and fundamentalneeds is central to working in person centred ways. An accurateunderstanding of needs will come from an appreciation of the humanityof each person with a disability. Rather than focus on deficits, the keyquestion is: what are the needs that must be met in order for the individualto have a typical, yet rich and meaningful, life.Life in, andwith, ordinarycommunityMy life, my saysupnddin div i du a li zednsti oecganpan d exthli e f swibeeindi rs hili v ssa p belb ili e t w e e n p e o p v i c ety/farpoam ili e s a n d s ertdeth ast is-baselneeds- b a s e d , roEnsabhipli n gsnios tr u ctures and relatrt ningPaetaiti vPla n nPosThe needsof theperson

What worksConsidering whether a personwill have needs relating to theirdisability e.g. mobility if theyhave cerebral palsy.Considering whether a personmight have needs stemmingfrom past experiences, e.g. aneed for acceptance stemmingfrom past rejection.Considering whether a personhas needs arising from theirvulnerabilities, for examplevulnerable to abuse, rejection,isolation.Considering whether aperson has needs arisingfrom their cultural or linguisticbackground.Making sure the person andtheir friends and family arecentral to identifying needs.Focusing on the future e.g.identifying that a person willneed to cook in their ownhome.What does not workThinking about the personmainly in terms of what theycannot do.Listing the deficits e.g.inability to read, walk or eatindependently.Accepting that the person hasidentified all their needs. Theymay define their wants but beunable to articulate fundamentalneeds.Focusing on the present e.g.identifying that a person “mustlearn to cook”.

Potential challengesAccurately identifying and considering universal human needs andneeds which arise from a person’s past experience and from theirdisability.Determining whether there is a difference between what a person witha disability says they want and what service providers say they need,and their actual needs.Influencing services so that they do not focus on the person’s deficits.

Questions for reflectionIf you work with an advocacy or information service:nnWhat dilemmas do you face when advocating for, or providinginformation to, a person whose disability or life experience impairs theirability to say what they really need? This includes big decisions abouttheir desired future.Do you give a person with a disability information about communitybased, mainstream organisations which could strengthen communityconnections and reduce reliance on disability services?If you work with an advocacy service:nnWhat questions would you ask disability service providers about:nHow they identify the complex needs of each person?nHow they would respond to these needs?What advice would you offer a service provider about identifying theneeds of a person living with disability?If you work with an information service:nWhat should you know about:nnnnHow a disability service provider identifies the complex needs ofeach person?How they respond to these needs?Do you pass this information to the person or their family so that theycan decide whether to approach the service provider?What do the answers to these questions mean for your work?

Life in, and with, ordinary communityWhat it means”Life in, and with, ordinary community” refers to where and with whompeople spend their time. Other terms commonly used include: “socialinclusion”, “social integration”, “social participation”, “‘good’ lives”, “typicallives” and “rich and meaningful lives”. This is a key outcome of working inperson centred ways.Life in, andwith, ordinarycommunityMy life, my saygin ddsundanividecu a li zednsti opan d exthli e f swibeevi ndi rs hiilsa p bb i l i e t w e e n p e o p l ev i c e sty/fappram ili e s a n d s eordt thesat i-bass neele d s - b a s e d , roEnabipshli n gsio ns tr u ctures and relatrt ningPaetaiti vPla n nPosThe needsof theperson

What it isLife in, and with, ordinarycommunity is a combination of:nnnparticipating in community lifebeing valued, e.g. as a tenant,host, neighbour, familymember, employee, volunteer,club memberhaving:na range of social contactsnfriendsna way of contributingna reason to get out of bedeach dayna real homenmeaningful worknhobbiesnfreedom to make decisionsnbeing listened tonexperiencing fun and joynusing mainstream resourcese.g. libraries, sports facilities,clubs, interest groups.What it is notA service life, as seen when aperson:nnlives or spends time in adisability centre located in thecommunity.has the role of ‘service client’as the main role in their life.Occupying a bed in a house.Living in a community, but notparticipating in community life.Always visiting communityservices in a group.

Potential challenges for advocacy servicesThe complexities of advocating that a person with a disability toreceive personalised support to live in the community.Potential challenges for information servicesThe difficulty of wording information to clearly convey that peopleshould be able to live in, and with, ordinary community.

Questions for reflectionIf you work with an advocacy or information service:nnnnTo what extent should you help people and their families to understandthe difference between living in a group home and living in, and with,ordinary community?How can you bring providers to a common understanding of what “lifein, and with, ordinary community” might look like?What are the dilemmas in referring people to service providers that donot use person-centred approaches?How can you assist people to find and access mainstream communityorganisations through which they can pursue their individual interests?If you work in an advocacy service:nWhat dilemmas do you face if the services needed to support a valuedrole in the community are not immediately apparent?

‘My life, my say’What it means“My life, my say” refers to the importance for everyone of having a level ofauthority over their lives. For people with a disability, this means not onlyabout control over lifestyle, but also a negotiated level of authority oversupport arrangements. This is a key outcome of working in person centredways.Life in, andwith, ordinarycommunityMy life, my sayednsgin ddsundaniv i decu a li zti opan d exthli e f swibeeindi rs hili v ssa p beb ili e t w e e n p e o p l v i c eppty/faram ili e s a n d s eordet thsat ibass nee d s - b a s e d , ro l eEnsabhipli n gsnios tr u ctures and relatrt ningPaetaiti vPla n nPosThe needsof theperson

What it isWhat it is notAsking the person what theywould most like.Following everything the personsays they want.Enabling people to have lots ofexperiences so they can makeinformed choices.Following nothing the personsays they want.Thinking not only about choice,but also about how people canhave more control in their ownlives.Ensuring that a person whofinds it hard to make gooddecisions is supported properly.Providing information so thatpeople can make informeddecisions. Involving family andallies to assist with decisionmaking.Connecting the person/family toothers who have been able totake some authority over theirlives.Giving people a say over theirsupport arrangements e.g. thestaff, the time they come andwhat do they do.Making decisions for the personabout everything.Telling a person what thedecision is after it has beenmade.Expecting that people willimmediately be able to makegood decisions without support

Potential challenges for advocacy servicesEnabling people to make informed decisions when they have impairedcapacity or little or no experience of a ‘good’ life.Supporting their choices, especially when these choices may lead toharm, particularly for people with impaired decision-making capacity.Defining the role of family and loved ones, especially if the person hasimpaired decision-making capacity, or is a child or young person.

Questions for reflectionIf you work with an advocacy or information service:nnnnnHow can you discover the barriers affecting a person’s ability to controltheir own life?How can you learn about their past experiences and the effect of suchexperiences on the way they express their needs?What kind of relationship should you have with service providers to bestensure that the person has a real say over their own life?How can you learn which providers respond to the decisions of aperson and/or their family more flexibly and personally?What weight should you give to cultural differences which could affecthow a person might like to control their life?If you work with an advocacy service:nnHow can you ensure that you focus on the person, listen carefully tothem and assist them to make decisions which will bring them positiveroles in the community?To what extent do you involve family, friends and others close to theperson in decision-making?

Positive beliefs and expectationsWhat this meansThere is a link between what we believe and our actions. What we believecan be conscious or unconscious.It is essential that all people who promote person-centred approachesbelieve that a ‘good life’ in, and with, community is achievable for allindividuals, regardless of their level of disability.Life in, andwith, ordinarycommunityMy life, my saygin ddsundanividecthpand exu a li zednsti oli e f swivbeendi rs hiivilsa p bb i l i e t w e e n p e o p l ev i c e sppty/faram ili e s a n d s eort thedsat i-bass neele d s - b a s e d , roEnabipshli n gsio ns tr u ctures and relatrt nin gPaetaitiPla n nPosThe needsof theperson

Beliefs and expectationsconsistent with person-centredapproachesEveryone:nnnnnis born into a commonhumanity and deserves a‘good’ lifeneeds to belong to a groupon the basis of their sharedhumanity, not on the basis oftheir disabilityneeds support, some morethan otherscan learn and communicatehas the inherent right todetermine their own futureand make informed decisions.A service can assist people to:nnparticipate and belong inthe communityhave freely given relationships.Beliefs and expectationsinconsistent with person-centredapproachesHaving a disability means thatpeople cannot have lives likeother peopleHaving a disability means havingmore in common with eachother than with other citizensOnly paid disability workers canmeet the needs of people livingwith disabilityFamilies cannot be an equalpartner with a service.

Potential challenges for advocacy servicesEnsuring that a service’s board, management and staff hold positivebeliefs and expectations about people with a disability.Establishing whether service providers hold positive beliefs andexpectations about people with a disability and that these carry throughto their work.

Questions for reflectionIf you work in an advocacy or information service:nnnnnnnWhat would you look for in a service, beyond what they say they believe,to show that they support people to have better lives and are involved indecisions about their own lives?To what extent do your service’s mission and vision statements reflectpositive beliefs and expectations of people with a disability?How do you review whether values and beliefs are reflected in actions?What knowledge and experience do staff need to have to raise theexpectations of people with a disability about the services they receive?Do the criteria for vacant positions spell out the values to which theorganisation is committed? What questions are asked at interview?Are there opportunities for board, management and staff to identifywhat is needed to ensure people with a disability can enjoy a full andproductive life?How does the service determine whether providers hold positive beliefsand expectations?If you work in an advocacy service:nHow can you work with providers to address gaps between what theysay they believe and expect and what they do?If you work in an information service:nIn what ways do you raise the sense of what is possible in people’s livesthrough your phone calls, publications or workshops?

PartnershipsWhat this meansGenuine partnerships between people with a disability and services helpthe former stay in charge of their own lives and ensure they have the rightsupport arrangements.Life in, andwith, ordinarycommunityMy life, my saysuin dnddesnger dansiis h i pli v cab beteliili t w e e n p e o p s e r vppy /f aam ili e s a n dordt thesat ibass nee d s - b a s e d , ro l eEnsabhipli n gsnios tr u ctures and relatu a li zthecednspan d exiv i dli e f switningbetaiti veti oPosP arPla n nThe needsof theperson

What happens with partnershipsWhat happens without partnershipsProfessionals and the personliving with disability and/or theirfamily share power, knowledgeand information.Professionals hold all power dueto their status and access toresources.The service recognises that theperson/family has importantknowledge about their ownneeds, and about how theseare best met.The service provider negotiateswith the person about howneeds should be met.With constructivecommunication, an alliance iscreated at both an interpersonallevel and a practical level.There is information sharingand collaboration on all majordecisions.Trust is built when the servicedelivers on promises.Professionals become thedecision-makers by default.Professionals control whathappens to the personService recipients aredisempowered and frustrated.

Potential challengesEntering a genuine partnership where authority is shared, each partyrespects and listens to the other and everyone work together on decisions.Determining the best relationship with the family or loved ones, especiallywhen disability impairs the capacity of the person to make decisions orwhen they are a child or young person.Building people’s confidence and ability to make decisions and exerciseauthority over their own lives.

Questions for reflectionIf you work with either an advocacy or information service:nnnnnnnIn what ways can you partner more with people with a disability andtheir families?To what extent are staff assisted in exploring who holds power and howto collaborate on decision-making?How can people with impaired decision-making ability be given relevantand accessible information and encouraged to come to their ownconclusions?How can services ensure that people have access to all relevant information,including people from culturally and linguistically diverse backgrounds andAboriginal and Torres Strait Islander communities?How can the service support people to participate in discussions aboutwhat they need to achieve a meaningful life?How does the service assess whether it is has given a person sufficientsupport to be the ‘author’ of their own future?How can the service encourage providers to establish partnerships withpeople and/or their families?

Planning and supportWhat this meansThere are three features of planning and support essential to a personcentred approach:1. It should be needs-based, as explained earlier in this booklet.2. It should be roles-based. This means that the support service shouldenable people with a disability to have valued roles in the community.3. It should be individualised. This means that, instead of following astandard process, the service should tailor support to each person’slifestyle aspirations, while being mindful of their vulnerabilities.Life in, andwith, ordinarycommunityMy life, my sayzednsthecpEnhaabt isli n gneeds tr u ctless - b a s e d , roures and rel-baividndsuin ddttu a liti opan d exganli e f swibeeindi rs hili v ssa p beb ili e t w e e n p e o p l v i c ety/farpom ili e s a n d s errt nin gPaetaiti vPla n nPosThe needsof thepersondsesha ti o naips

Strategies more likely to beperson-centredStrategies less likely to beperson-centredNeeds basedIdentifying the needs essential toa good life.Fitting the person into what theservice has on offer (the menu).Understanding that needs arethose shared with other humans.Seeing needs in the context ofthe person as a service client.Recognising that some needsarise from the person’s disabilityor past experience.Negatively labelling needs e.g.autistic, challenging behaviour.Seeing needs in basic termsonly.Roles basedSupporting the person to havevalued roles in the community.Supporting the person only inthe role of service client or othernon-valued roles.Fitting the person into activitiesand programs.IndividualisedResponding in a highlypersonalised way.Ensuring responses are relevantto what the person needs.Tailoring responses to needse.g. what is done, by whomand where.Confusing having personablestaff with working in a personcentred way.Confusing working in a one-toone relationship with working ina person centred way.Offering the person the sameprogram as others.Offering individualised supportthat is not relevant.

Potential challengesGaining a deep understanding of the meaning and importance of valuedroles.Understanding what supporting someone in a needs-based, roles-basedand individualised way means in practice.Advocating for a person deeply entrenched in a service that uses a groupbased, building-based model and is unwilling or unable to change.Ensuring that everyone in the organisation understands that working oneto-one with people does not necessarily mean it is person centred.

Questions for reflectionIf you work with an advocacy or information service:nnto what extent does the service promote valued roles for each person?(See the section Life in, and with, ordinary community.)how can the service influence providers so that the planning process:nnstarts with the dreams and interests of each person?ensures that the person has sufficient information and experienceto make informed decisions about their future?critically examines how each person can pursue their interests,become a valued community member and develop friendshipsand other freely given relationships?nidentifies and tries to overcome the effect of negative stereotypesand expectations?nnnnnidentifies and responds to pressing needs?shifts from ‘doing activities’ to assisting the person to pursueroles and relationships in the community3?how does the service respond to problematic support arrangementswhich arise from a lack of planning by providers?to what extent can the service influence planning so that supportarrangements are:nbuilt on the strength of people and their families and friends?nrelevant to the needs of the person?ntailored to give the person and/or their family a say?Ramsay, S., (2007) Roles Based Planning: A Thoughtful Approach to Social Inclusionand Empowerment, International Social Role Valorization Journal, 2 (1), 4-12.2

Enabling structures & relationshipsWhat this meansStructures can be thought of as an organisation’s systems and procedures.Often service providers require significant structural and cultural changebefore they can successfully implement person-centred approaches.Life in, andwith, ordinarycommunityMy life, my saydin dgividu a li zednsti oecsupndanpan d exthli e f swibeevi ndi rs hiilsa p bb i l i e t w e e n p e o p l ev i c e sty/farpoam ili e s a n d s ertdeth asbat isselneeds- b a s e d , roEnsipabhsli n gti o nstr u caletures and rrt nin gPaetaiti vPla n nPosThe needsof theperson

Organisational elements toconsider in implementing aperson-centred approachOrganisationalOrganisational structurestructureSystem/procedural aspects to consider in implementing a per

The term "person-centred approach" is best explained by looking at what it means for both people living with a disability and what it means for the . organisations providing services to them and their families. Person-centred approaches give people with a disability: n. valued roles. n. participation and belonging in the community. n

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