SD/ WA

Person-Centred Approaches

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Satellite DocumentWide Angle CollectionInternal discussion paper

Technical Resources DivisionApril 2014

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Consultant / Author Stefan Lorenzkowski

Coordination Chiara Retis

Key contributor Ahmed Ghanem

Feedback Priscille Geiser Michael Guy

Edition Handicap International Technical Resources Division

Layout Stéphanie Deygas Knowledge Management Unit

Photo credits © Sunil Pokhrel/Handicap International, Nepal, Kanchanpur, 2013

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Table of contents

Summary Introduction

I. Principles and benchmarks p. 7 A. Origins of PCAs B. Related approaches and debates C. Relation with international conventions and frameworks D. Why PCAs are important E. The main principles of PCAs F. PCA framework G. PCAs as a key element of quality management

II. Practical implementation for Handicap International – Planning p. 17 A. Challenges of PCAs B. Solutions C. Planning of PCAs at organisational level D. Assessment of how PCAs can be incorporated into an organisation’s service provision E. Planning of PCAs F. Monitoring and evaluation

III. Strategies for implementing PCAs p. 28 A. Organisational capacity development B. Increasing user’s participation in service management C. Human resources development D. Quality standards development E. Training and skills development F. Lessons learnt and good practice exchange G. Empowerment and capacity development H. Individual action plans I. Specific contexts and target groups J. User groups with special demands K. Intercultural aspects L. Emergency and post-emergency contexts

IV. PCA case studies p. 43 A. Good practice case study: Lebanon B. Innovation case study: Occupied Palestinian Territories C. Good practice case study: Tajikistan

V. Appendices p. 52 A. Reference list B. Sactisfaction survey – Mobile rehabilitation team C. The child individual (personalized) plan form D. Social assessment form E. Disability, social inclusion, community rehabilitation and assistive technology triage form F. Rehabilitation action plan G. Personal plan

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Summary

What is this document?

This document is internal to Handicap International. It is a first step towards defining Person Centred Approaches (PCAs) and how these might be applied or operationalised across Handicap International’s programmes. In particular this document builds on some valuable experience on PCAs developed by Handicap International in the Middle East and Central Asia, in the sector of physical and functional rehabilitation1

Who is it for?

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Put simply, PCAs are concerned with ensuring that individual service users play a central role in defining and shaping the services that they receive. This is a transversal concept, applicable to ALL types of services. Putting the person at the centre of how services are conceived, delivered and evaluated is a key requirement to ensure quality of services and systems of services. It is one of the quality criteria used by HI its analytical framework on Access to Services. Therefore this document could be interesting for all Handicap International’s technical and operational staff, across all regions / sectors of activity, as away to review their current and future practices to promote a balanced, sustainable mix of roles and responsibilities between regulatory systems, service providers and beneficiaries.

How will this document be used?

This document has been written by an external consultant and it takes into account, among other resources, the contents of the discussion and tools shared during a regional seminar in Amman in November 2011 . It has been reviewed to enhance some connections with existing HI frameworks. As of now, it is not a formal position of Handicap International. Rather it is a starting point: a discussion paper, to begin an internal review about PCAs and how they might be applied more strategically.

The document will be disseminated via Skillweb so that all staff have the possibility to find out more about PCAs and how this relates to their work. At the headquarters, key technical and operational staff will use this document as a starting point for launching more in-depth discussions about PCAs. The final objective will be to use this document to produce a formal practical guide that works in synergy with Handicap International’s existing frameworks and approaches. Once the practical guide is completed, programme staff will be supported to apply PCAs in their work.

1 Please see the Handicap International Seminars Website which details the 2011 thematic seminar on User. Centred Approaches, held in Amman, Jordan: http://www.hiseminars.org/seminar-on-user-centered-approach/index.html

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‘Person centred planning begins when people decide to listen carefully and in ways that can strengthen the voice of people who have been or are at risk of being silenced.’

‘Person-centred planning celebrates, relies on, and finds its sober hope in people’s interdependence. At its core, it is a vehicle for people to make worthwhile, and sometimes life changing, promises to one another.’

‘Person centred planning offers people who want to make change a forum for discovering shared images of a desirable future, negotiating conflicts, doing creative problem-solving, making and checking arrangements on action, refining direction while adapting action to changing situations, and offering one another mutual support.’

John O’Brien

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Introduction

Handicap International works to respond to the needs of people with disabilities and vulnerable populations, to improve their living conditions and promote respect for their dignity and fundamental rights. In order for people with disabilities and vulnerable populations to participate in and contribute to their communities, they need access to a wide spectrum of services which respond to their diverse and evolving needs, priorities and choices. The rights to access such services are enshrined in various international human rights treaties, such as the UN Convention on the Rights of People with Disabilities (UNCRPD). These rights are universal and should apply equally to all, but often this is not the case. As such, Handicap International promotes specific measures to equalize access to services for the most excluded, in particular by supporting the development of compliant public policies, systems of services delivery, and adequate human resources and infrastructures.

Access to services framework

In order to analyze a country situation and determine priorities for improving access to services for people with disabilities and vulnerable populations, Handicap International uses the ‘Access to Services2

Handicap International’s experience has demonstrated that a combination of three aspects is essential to ensure access to services: (1) a comprehensive spectrum of services with a principle of continuum between them; (2) a functional systems of stakeholders in which decision-makers, providers and users effectively play their roles; and (3) a set of quality criteria framed by sound approaches and regulatory mechanisms.

’ framework. This framework supports information collection and provides guidance to assess the existing range of services and how they interlink (continuum) to ensure optimum benefits for users. It also supports the analysis of the system of stakeholders and how they play their role to enable access to services for all. Furthermore, it helps Handicap International teams to examine the extent to which human rights principles and quality criteria are respected and enacted through service provision.

2 http://www.hiproweb.org/uploads/tx_hidrtdocs/GM05_EN_04_screen.pdf

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Person Centred Approaches: quality and impact of services

Person-centered approaches (PCAs) link to the third element of the diagram above: i.e. they are one aspect of a broader set of criteria concerning the ‘quality and impact’ of services. PCAs refer to a set of approaches that stress the importance of the individual service ‘user’ in the process of accessing and fully benefitting from services. PCAs pay a central attention to the active role of the person in the process of accessing services, by associating them in decision-making, finding options that are tailored to each individual situation, ensuring a coherent service response that corresponds with other aspects of the person’s life. Person centered approaches therefore focus on the empowerment of service users. This is achieved through a comprehensive approach, combining: (1) actions at an individual service user level, but also by (2) technical support and capacity building for service providers and (3) advocacy and lobbying to government authorities and other decision makers. PCAs give us practical approaches for enacting some core human rights principles and values, such as: dignity, autonomy, freedom to make one’s own choices, independence (CRPD article 3.a), participation (CRPD article 3.c, 4.3), respect for difference (CRPD article 3.d), equality between men and women (CRPD article 3.g), respect for the evolving capacities of children with disabilities (CRPD article 3.h, 7.3). As such, PCAs are a key element to ensure a real shift from practices which tended to consider people as simple ‘recipients’ of care from expert practitioners, towards recognizing the person’s central role and valuing his/her expertise in this process and enabling choices to the best possible extent.

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I. Principles and benchmarks

A. Origins of PCAs Person centred approaches emerged in the late 1970s in the fields of nursing and care. They contrasted with traditional provider centred approaches in which: care provision was considered the priority; the patient tended to be placed in a passive role, simply as a recipient of services; decisions were usually made without taking the wishes and needs of the patient into consideration; and staff of services were recognised as the specialists with a superior role.

PCAs placed the priority back onto the person, allowing him to actively participate in his own therapeutic planning. In this approach staff and patients interact to tailor the service and therapeutic interventions to the individual, accounting for a diversity of needs and social and environmental factors. At the core of PCA is the concept of person centeredness: regarding an individual from different perspectives in his social environment.

PCAs aimed to form and facilitate relationships between the service providers, the beneficiary and other relevant actors within their personal environment, with the objective to empower the person within his environment. As such, a person’s individual situation, his attributes and his aspirations are all taken into account by service providers.

The PCA builds on the values of respect for the person, the right for self-determination, mutual respect and understanding3

. In order to support these priorities, service providers have to fully acknowledge aspects of the individual’s living conditions besides the health condition. These can include educational background, employment status, level of disability experienced, family poverty and others. As such, this often demands service providers to adjust their management and service provision structures.

B. Related approaches and debates In this document it is not possible or relevant to provide an exhaustive view of related approaches to the PCA. However, we can summarise here by saying that the emergence of PCAs in the 1970s coincided with various other concepts and approaches emerging around the same time, for example4

• Patient centred care aims to understand the personal meaning of illness and to develop common therapeutic goals. This is achieved by looking at individual concerns, ideas, expectations and needs. The patient shall be understood in the context of his psycho-social context and to share responsibilities in the decision

:

3 McCormack (2010a) p2 4 McCance (2011)

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making process. Patient centred approaches come from the area of health and care services.

• Family centred care was developed as a way to care for children and their families. With this approach health care shall be enabled to be planned around the family as a whole. Not only should the child be considered as a care recipient but the whole family. Family centred care is mainly used in geriatric and paediatric care.

• Relationship centred care differ from person centred approaches. Here not only the care recipient is seen as the main beneficiary but all persons involved into the care process. Senses of security within relationships, belonging to the care processes and significance of the joint care among others are central elements of this approach.

• Women centred approaches developed around the individual needs, aspirations and expectations of women.

Current literature debates concentrate on the clarification of what personhood and person centeredness actually mean and how they can be applied in practice. Different authors attempt to determine the cultural and contextual challenges of person centred approaches.

One predominant debate concerns taking a different perspective in the care process: i.e. moving the focus from the specific needs of different groups (e.g. patient, women) to the interactions between all involved parties.

C. Relation with international conventions and frameworks As discussed previously in this document, it is important to understand that the concept of PCAs is located within a much broader conceptual and legislative framework.

PCA connects with key notions and principles such as participation and active involvement, individualized measures, freedom of choice, respect for the person’s dignity, autonomy, empowerment, and valuing people’s capabilities. In this section we provide a very brief overview about how PCAs and related notions interrelate with the key international conventions and approaches which guide the work of Handicap International. This is not intended as an exhaustive list but rather a basic orientation:

• The UN Convention on the Rights of Persons with Disabilities

The CRPD, adopted in 2006, is the most significant legal development for persons with disabilities world-wide. It illustrates the shift in attitudes and approaches to persons with disabilities: from seeing them as "objects" of charity and welfare to viewing them as participating, contributing members of society, where they have the same rights as others in their community, and are capable of making decisions for their lives. The Convention is a disability-specific human rights treaty, clarifying how established civil, political, social, economic and cultural rights apply equally to persons with

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disabilities. The central tenet of the Convention is non-discrimination; its vision is that of an inclusive society.

The notion of participation appears throughout the whole document and it is referred both to the participation to any decisions that directly concerns the person and any decisions concerning the community; modalities to ensure such participation are mentioned as well (support, accommodation and developing capacities that are necessary for people’s participation in consultation and decision-making processes).

Explicit references to key ’ingredients’ of PCAs, inter alia:

Art.3: General Principles a) Respect for inherent dignity, individual autonomy including the freedom to make one's own choices, and independence of persons; c) Full and effective participation and inclusion in society, d) Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity; (h) Respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities. Article 4.3 – General obligations: In the development and implementation of legislation and policies to implement the present Convention, and in other decision-making processes concerning issues relating to persons with disabilities, States Parties shall closely consult with and actively involve persons with disabilities, including children with disabilities, through their representative organizations. Preamble (n): Recognizing the importance for persons with disabilities of their individual autonomy and independence, including the freedom to make their own choices. Article 24 – Education, (e): Effective individualized support measures are provided in environments that maximize academic and social development, consistent with the goal of full inclusion. Article 26 – Habilitation and Rehabilitation: States Parties shall organize, strengthen and extend comprehensive habilitation and rehabilitation services and programmes, particularly in the areas of health, employment, education and social services, in such a way that these services and programmes: (a) Begin at the earliest possible stage, and are based on the multidisciplinary assessment of individual needs and strengths; Article 8 – Awareness-raising: 1. States Parties undertake to adopt immediate, effective and appropriate measures: (…) (c) To promote awareness of the capabilities and contributions of persons with disabilities.

• The Disability Creation Process (DCP)

This model sees disability as the result of the interaction between personal factors, including impairment, and contextual factors such as attitudes, presence (or absence) of services and institutional frameworks that can either function as obstacles or facilitators for the full participation in society for individuals. As a consequence, disability is not seen as a fixed status, rather an evolving one. On one hand, personal and environmental factors together define the level of functioning in the daily activities and the social role this person plays in the community; on the other hand, through their activities and by being a role model in society, persons with disabilities can influence the

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environment, contribute to modify attitudes and advocate for and inclusive society where barriers to participation are eliminated. The DCP moves from a purely medical approach to disability, based on diagnosis and impairment, to a right-based one.

The Disability Creation Process

Legend: PF <-> RF: Protective factor - Risk factor

• Community Based Rehabilitation

Community Based Rehabilitation (CBR) is defined in 2004 by the International Labour Organization (ILO), United Nations Educational, Scientific and Cultural Organization (UNESCO) and World Health Organization (WHO) as “a strategy within general community development for the rehabilitation, equalization of opportunities, poverty reduction and social inclusion of all people with disabilities. CBR is implemented through the combined efforts of people with disabilities themselves, their families, organisations and communities, and the relevant governmental and non-governmental health, education, vocational, social and other services.”

The CBR Guidelines of WHO, ILO, UNESCO and IDDC (2010) provide a unified understanding of the concept and principles of CBR as a comprehensive rights-based approach and they represent a practical strategy for the implementation of the CRPD. The CBR Matrix from the Guidelines summarises the five main components of CBR: Health, Education, Livelihood, Social, Empowerment. The latter is a crosscutting theme

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and relates to the empowerment of people with disabilities, their families and communities, which is fundamental for ensuring access to each development sector and improving the quality of life and enjoyment of human rights for people with disabilities.

An illustration of empowerment as a major shift in CBR, WHO, 2010

In the guidelines, several definitions of empowerment are presented: having a say and being listened to, self-power, own decision-making, having control or gaining further control, being free, independence, being capable of fighting for one’s rights, and being recognized and respected as equal citizens and human beings with a contribution to make.

These guidelines encourage and promote a move away from the traditional model of CBR – a medical model, where the focus on the provision of rehabilitation services created a dependency model (giver and receiver), to a community-based inclusive development model. Awareness, information, capacity building, peer support and participation are the main components in the process of empowering of people with disabilities.

For example, the importance for health-care service providers of having appropriate communication skills to accommodate the needs of people with different impairments is highlighted in the health component of the guidelines.

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D. Why PCAs are important

The following, adapted from Handicap International’s Amman seminar in 2011, attempts to outline how PCAs can influence change at three distinct levels:

Examples why PCAs are important

Service provider

• Building on respect of client’s dignity, enabling autonomy, behaviors, needs and offering choices

• Improve the supportive environment of service provision • Access to accurate information on the service user’s situation, abilities

and needs for better service provision • Improve the therapeutic relation in multidisciplinary teams • Service can better address needs of all users including persons with

learning or intellectual impairments, persons with mental health problems, ethnic minorities, children and women

Decision makers

• Sustainability of services • Change of the public opinion and acceptability of social services • Support involvement of users in change of policies • Ensure that the services are provided on good quality criteria by

involving clients in the rehabilitation process. • Maximizing potential and providing decision making • Providing better transparency of service delivery, efficacy and common

standards Service users

• Increased proactive initiative and empowerment of service user and families

• Contribution to the democracy/transparency/active role of citizens • Supporting individual rights, values and beliefs. • Focus on abilities rather than disabilities • Support client to understand his living situation • Can improve clients' occupational abilities and their satisfaction with

therapy • Improve participation of persons with disabilities in informative choices • Improve inclusion of persons with disabilities in their communities and

services provision team • Facilitated clients’ autonomy and independence

E. The main principles of PCAs

PCAs have the following main principles:

• The individual stands in the centre of the PCA. His attributes, will and needs must be respected.

• To fully respond to an individual’s needs, services must adopt a holistic understanding of all social and environmental factors. These include the family, the living environment and employment or education status.

• To goal is to strengthen the individual’s autonomy and self-determination. Participation in decision making processes is guaranteed.

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• The interaction between the person and the staff of service providers requires specific attention. Their relation is central for the delivery of person centred services that can equally bring in the expertise of the individual and the staff.

• An important pre-requisite of empowerment is capacity building of individuals, both the service user and the staff of services.

The PCA is a relational concept for the person in the context of care or service provision. In order to respect all aspects of the individual personality it has to consider the principals of dignity and respect. Care or service providers have to consider the personal and family perspectives and choices. This includes the cultural beliefs, values and the level of family knowledge. Dignity also means to incorporate the person and his family into all aspects of planning.

Providers have to share accurate and comprehensive information about the care and services they are intending to provide. The information must be presented in an accessible format for the person and his family considering the condition, language, level of understanding and culture.

The PCA has a strong empowerment character for individual choice. This is demanded in the participatory planning processes and through the holistic perspective on the individual’s situation. The person has the right and responsibility to participate in the context of their ability and preference. Services are demanded to respond to and respect empowering work by providing suitable choices.

F. PCA Framework The core principals of the PCA require a framework that enables a participatory planning process, a respectful practice environment and a multidisciplinary team to provide the care. The development of practical frameworks contributed to operationalise person centred approaches and to provide tools to enable their evaluation. McCormack5

1. As prerequisites the service provider staff is competent, have developed interpersonal skills and are committed to the job.

a person centred practice framework consists of the following:

2. The service environment provides a context in which the provision of interventions is delivered through an appropriate skill mix, systems facilitating shared decision making, supportive organizational systems effective relationship between staff, the potential for innovation and an adequate physical environment.

3. Person-centred processes focus on delivering service through work with the individual’s beliefs and values, having sympathetic presence, direct participation in decision making and the provision of holistic service.

4. Effective person cantered practice results on outcomes such as satisfaction with service, involvement and feeling of well-being and the creation of an appropriate therapeutic environment.

5 McCormack 2010b) p. 95.

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Person centred framework6

G. PCAs as a key element of a quality management

In many countries quality management systems became demanded by national frameworks for licensing of service, evaluation and ensuring accountability towards the users and authorities. One important European quality management system that is relevant for the rehabilitation sector is the European Quality in Social Services (EQUASS). It was developed in 2002 as EQRM and builds on self assessment and a multi-stakeholder perspective. EQUASS contains nine quality principles7

1. Leadership: Organisations demonstrate leadership internally, within the rehabilitation sector and within the wider community by promoting positive images, challenging low expectations, best practice, more effective use of resources, innovation, and a more open and inclusive society.

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2. Rights: Organisations are committed to protecting and promoting the rights of the person served in terms of equal opportunities, equal treatment and equal participation, providing informed choice and adopting non-discrimination and positive actions within their own services. This commitment is apparent in all elements of service development and delivery and in the values of the organisation.

6 McCance, T., McCormack, B., Dewing, J., (May 31, 2011) "An Exploration of Person-Centredness in Practice" OJIN: The Online Journal of Issues in Nursing Vol. 16, No. 2, Manuscript 1. 7 Chiriacescu, D. (2006), p. 18

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3. Ethics: Organisations operate on the basis of a Code of Ethics that respects the dignity of the persons served and their families or carers that protects them from undue risk, that specifies the requirements for competence within the organisation and that promotes social justice.

4. Partnership: Organisations operate in partnership with public and private sector agencies, employers and worker representatives, funders and purchasers, organisations of people with disabilities, local groups and families and carers to create a continuum of services and achieve more effective service impacts and a more open society.

5. Participation: Organisations promote the participation and inclusion of people with disabilities at all levels of the organisation and within the community. In pursuit of more equal participation and inclusion, organisations work in consultation with representative bodies and groups to support advocacy, the removal of barriers, public education and active promotion of equal opportunities.

6. Person Centred: Organisations operate processes that are driven by the needs of both the person served and potential beneficiaries. Users are involved as active members of the service team, respect the individual's contribution by engaging them in self assessment, service-user feedback and evaluation and that value personal as well as service goals. All processes are subject to regular review.

7. Comprehensiveness: Organisations ensure that the person served can access a continuum of holistic and community based services, which value the contribution of all users and potential partners including the local community, employers and other stakeholders, and that span from early intervention to support and follow up, delivered through a multi-disciplinary team approach or multi-agency partnership with other service providers and employers.

8. Result orientation: Organisations are outcome focused, in terms of both perceptions and achievements, on the benefits to the person-served, their family / carers, employers, other stakeholders and the community. They also aspire to the achievement of best value for their purchasers and funders. Service impacts are measured, monitored, and are an important element of continuous improvement, transparency and accountability processes.

9. Continuous improvement: Organisations are proactive in meeting market needs, using resources more effectively, developing and improving services and utilising research and development to achieve innovation. They are committed to staff development and learning, strive for effective communications and marketing, value user, funder and stakeholder feedback and operate systems of continuous quality improvement.

The quality principles of EQUASS show a clear alignment with PCAs. Thus service users can be addressed as valued persons or customers. They can participate in the service provision concerning their needs, abilities and wishes. Another important principle relevant for person centeredness is comprehensiveness that can enable a holistic approach to planning interventions.

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Summary of Principles and benchmarks

• This document is just a first step towards Handicap International understanding PCAs and thinking about how they might be operationalised more strategically in future.

• Handicap International follows a broader Access to Service framework, of which PCAs are one part – specifically concerning the quality and impact of services.

• We can understand PCAs as a tool for organisations to adjust their service provision to the context of the individual and his environment by a comprehensive planning process. This process aims to improve the access to services based on the understanding of human rights of persons with disabilities. It supports organisations in the delivery of service and to ensure that they are accessible to persons with disabilities in their communities.

• The PCA is grounded in international legislation and frameworks. The values of human rights in accordance to the UN CRPD are integral elements of PCA. At the level of service provision the ICF and DCP can support developing person centred services.

• The PCA is a core approach for HI's interventions as it transfers international frameworks into practical and tangible approaches for programmes and projects.

• The PCA can further strengthen the empowerment of service users in their advocacy towards decision makers at macro level and service providers at micro level.

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II. Practical implementation for Handicap International – Planning

Person centered approaches can be included in services and projects. They bring a new working place culture to organizations with different hierarchies, structures and communications. These person centered cultures allow the consideration of the individual service user and his environment. As any change process, first experiences with PCA can produce resistance both for users and providers. The principle of addressing relations in service provision can lead to a change in perception of roles and create insecurities. This chapter introduces strategies how PCA can be introduced to smooth the change process.

PCA can play an important role in creating services that respect human rights, enable access to services and empower user oriented services. The main target group of PCA are organisations that provide services. As a holistic approach different actors have to be addressed. Their needs (service users) and support (decision makers) are needed to gradually build PCA. The consideration of the cultural context is necessary so that access to services of persons with disabilities can be grounded in the local environment and that services are meaningful.

Approaches to address social triangle actors

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This framework can be linked to others. The example below presents how rehabilitation providers can adjust their services according to the PCA.

Focus areas and levels to create PCA in services

Focus areas Description Concerned Actors

Quality focus

Within the national framework quality standards, user identification indicators, referral mechanisms and service evaluation processes are defined.

Decision makers define quality aspects and overall framework Service providers meet the demands through licencing and evaluation Users can benefit/ ask for increased quality...

User focus

Users have the capacity to decide which service is best for them. They have access to relevant information, can choose between different providers and can directly participate in the service provision design and implementation.

Service users are empowered to have access to information about providers and referral mechanisms Service providers allow comprehensive participation of users

Management focus

Service provider management has the capacity to plan service provision, in the context of national frameworks and ensures sustainable functioning. Management is oriented along the principles of access to services and human rights based approaches. The use of financial, personal and material resources ensures lasting service provision.

Service providers create efficient and quality oriented management structures

Staff focus

Service providers ensure that service staff has the knowledge and capacity to provide services according to the national quality framework and the UN CRPD. They make use of person centred approaches and involve a wide range of concerned actors.

Service providers enhance the skills and capacity of staff

Process focus

Processes of service providers respect human rights based approaches and access to services. They aim to become more individualized support services. They are standardized, do not discriminate users on the grounds of different criteria, ensure the holistic understanding of user’s abilities, resources as well as needs and enable direct user’s participation in the design and implementation of service.

Service provider allow participation of empowered service user

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A. Challenges of PCAs Person centred approaches may be confronted with different challenges related to different actors and also to cross cutting topics. They are often a result of a lack of knowledge and experience by the different actors involved into service provision. Different projects and programmes of HI already experience challenges of person centred approaches. The challenges can be summarized according to different actors.

Challenges for PCA actors

PCA Challenges experienced Decision makers

• Service provision framework is not adapted for person centred approaches

• Service providers are often state entities with a clear budget that cannot be changed easily

• Even if the UN CRPD is ratified, their principles are not yet applied in legislation and policies

• Involvement of communities is not yet an element of service provision

• Mechanisms for users’ identification as well as referral is not in place

• Mechanisms for licensing and evaluation of service providers is not in place

• State budgeting does not allow individual provision of services across different disciplines

Service provider

• Requires resources (time, money, staff) • Lack of information on PCA in the field of practice of organizations. • Existing structures and management do not correspond to person

centred approaches • Loss of autonomy, authority of professional staff • Change in communication and participation structure between

service providers and user • Possible change in service provision system with commissioning of

services, users identification, licensing and evaluation Service users

• Lack of families’ awareness and understanding of the (UCA). • Education level of service users and their families can lead to

implementation difficulties • Service users tend to be passive and see service providers as

omnipotent persons. Their experience in participation can be limited.

Some challenges can be found in cross cutting issues related to the implementation of PCA projects and services8

8 Adapted results from Middle East Regional Technical Workshop, Amman, 14-17 November 2011

. They concern the general context and all actors at macro as well as micro level.

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Culture can pose different challenges for person centred approaches9

Workplace culture is characterized by shared values, team effectiveness, a commitment to continuous learning and improvement and transformational leadership. In this setting a paradoxical relationship between patient empowerment and physician control can appear with a tendency of a resistance to change.

. At this level challenges can appear through the hegemony of specific social groups (ethnic groups, men etc.) that dominate the general communication in society. This can have a direct impact on access to basic rights and access to services.

Different understandings of learning cultures can appear in services. The traditional learning culture is rather dominated by acquiring knowledge for standard situations. The PCA requires a different learning culture that includes learning from mistakes, development of innovation and working with the relationship between the service user and patient. This learning culture needs a workplace culture that provides a supportive context and that understands learning as an integral part of practice.

The overall context of service provision can be defined by external factors at macro level. They can influence PCA and require specific measures. Specific contexts are emergency or post emergency situations. Also the general framework can define the context of PCA oriented service provision depending on the mechanisms, licensing regulations and user referral in place for service provision. Addressing these contexts need the involvement of stakeholders in the implementation of services or projects.

Within organisations challenges are often posed by the structure (organizational size and scope of services providers, orientation of service provision) of the organisation. This can be related to the context and available resources. It is further related to the workplace culture in terms of support through management, lack of staff autonomy.

Time can be a challenging factor for PCA. The implementation demands more time for service provision due to participation of different actors. Many service providers have a no-time environment, which has time for the physical, visible tasks of care, but not for the less quantifiable, visible aspects of emotions and communications10

PCA service can require additional resources to be implemented. These can be financial resources (no sufficient funds available, no structural links with national service provision framework) and human resources (Staff ration, education or training degree of staff, competences of staff, team orientation).

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B. Solutions

The challenges above are an indication that the implementation of the PCA is complex. It is a multidimensional concept and often there is a lack of clarity what exactly constitutes the PCA. The implementation demands individual setup according to the situation, context and resources.

9 See chapter Intercultural aspects for further explanations on culture. 10 Packer, 2000.

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These challenges give indications on aspects that have to be considered if PCAs shall be implemented. At the level of decision makers the main provisions is the creation of a national framework that enables the implementation of PCAs. This involves setting up identification and referral mechanisms that already take the individual situation of people with disabilities under consideration. For the relation between decision makers and service providers clear quality standards that contain person centred values have to be in place.

Service providers require a clear allocation of resources for developing and maintaining person centred approaches. This includes training of staff, sufficient amount of time for creating an exchange in the team and between all actors of the service provider. The issue of perceived authority loss has to be clearly addressed by the management. All these elements have to be included in setting up a structure with clear leadership and participative decision making processes. Capacity building of provider’s staff is needed to prepare them on the demands of quality management, ongoing monitoring of service and evaluation.

Information about available services and access to services is a main issue for service users and their families. Information must exist in relevant formats (e.g. different languages, easy to understand, images), be accessible in different formats (e.g. leaflets, Braille, internet sites, posters) and be up to date. Often personal information services and consultations can help service users to understand their rights and available services. The users’ empowerment to become active service users might be the most challenging aspect to be tackled in the long term.

C. Planning of PCAs at organisational level In the implementation of PCAs, service providers have an important role. They are leading the promotion and implementation, which requires awareness of actors, demands knowledge and information. Mutual trust between all involved actors and common values such as openness, learning and change are important.

There is not one solution that fits all the needs and contexts of projects or services. Depending on the involved actors, target groups and the overall situation the planning has to be adapted to the situation. Besides the general planning cycle knowledge transfer and participatory structures have to support the planning process.

The different strategies to promote and develop PCA can be linked to other activities such as empowerment or advocacy work. At the inception of this process the involved actors must be aware of the requirements of PCA and agree to participatory structures that are obligatory throughout the whole period. Participators mechanism (e.g. steering group, ongoing participatory processes of all stakeholders) and awareness raising have to be continued in the next steps.

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Assessment

Planning Carrying out

of plan

Monitoring and

evaluation

Planning cycle

D. Assessment of how PCA can be incorporated into an organisation’s service provision

Handicap International uses the Access to Services framework to make a macro level assessment of service provision within a country and to identify possible areas for support or intervention. Once a decision is taken to work with certain service providers, Handicap International will make more specific assessments of individual organisations to plan how these can be supported. Considerations about PCAs and how they can be adopted can be included in this. At micro level within the organisation you will have to identify the main direction of your services that already exist, the change you want and are able to make, the available resources (finances, time, human staff, level of training) and the objective you are setting for yourself in terms of PCA. Concerning your resource needs you will have to get an idea of funding requirements that can be covered within your national context. Try to make an initial estimation of additional funding needs concerning PCA related services. At the micro level of service users, you have to identify the needs and demands of service users and the barriers they experience at community level. The internal assessment of service providers is important to the strategies chosen for moving towards PCA. The focus during the assessment should be put on11

11 Compare to: Institute for Patient- and Family-Centered Care: Advancing the Practice of Patient- and family-centered care in hospitals – how to get started.

:

Knowledge transfer

Participatory mechanisms

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• Organizational culture, philosophy of service and mandate: The self definition of organisations in their service provision are the base of their overall functioning and to what extent person centred and human right values are incorporated. Elements of interest are the vision of the service provision, the mandate that the entity follows and if there is a philosophy of service provision.

o Has the organization defined quality standards and is oriented along human rights based approaches? How do they consider the service users (e.g. persons with disabilities)?

o Are the philosophy of service and the mandate communicated to service users, civil society organisations, community and decision makers?

o Do the organisation policies include models of cooperation with service users, community and civil society organisation?

o Are the organization’s policies, programs, and staff practices consistent with the view that service users are allies for patient health, safety, and well-being?

o To what degree are disability and inclusion mainstreamed into the philosophy, mandate and vision of the organisation?

o Is community based orientation an attribute of the service provision?

• Roles of and participatory processes for service users and interaction with decision makers: The interfaces for cooperation with external actors indicate the openness of an organisation towards other stakeholders. Certain points of interaction can be identified such as

o Assess the extent to which the concepts and principles of person centred approaches are currently implemented within your service.

o To what extent are the service users honestly considered by the management and service staff?

o Are there regular participatory committees that allow the involvement of service users and community?

o Do the processes allow participation of service users? o To what extent does the organisation interact with decision makers in

official structures and processes? o How does the organisation facilitate the participation of persons with

disabilities, women, poor people, ethnic minorities and other marginalized groups?

o Is the organisation involved in community based rehabilitation structures and processes?

• Accessibility and architectural design: Accessibility, general architectural

design and facilitation of transparency invite potential service users to use a service and to participate in its design. The core elements of interest are:

o Are the venues of the organisation accessible in design and welcoming culture?

o To what extent is the organisation aware of providing support to reach the venue of service provision?

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o Is the organisation involved in outreach community work and provide elements such as an outreach or mobility team?

• Patterns of service: The way how a service is carried out is the moment when the service user can experience best the orientation towards his needs and abilities. In the patterns of services the degree of respect of person centeredness is best visible.

o Are family members and friends of service users welcome to be with the patient, in accordance with patient preference, and not viewed as visitors?

o Are service users and families viewed as essential members of the service provision team? For example, are they encouraged and supported to participate in care planning and decision-making? Do staff practices reinforce that care will be individualized for patient and family goals, priorities, and values?

o Is the service provision coordinated with patients and families and across disciplines and departments?

• Patient and family access to information: Available information about service

is an important prerequisite but also during the actual service provision for service users. Here the set up of service, the role of service users, the expected results and the possibility of user’s involvement are important indicators.

o Are there systems in place to ensure that service users have access to complete, unbiased, and useful information?

o Do service users have timely access to service medication lists, clinical information, rehabilitation plans and discharge or transition summaries?

o Are informational and educational resources available in a variety of formats and media and in the languages and at the reading levels of the individuals served?

o Are patients and families encouraged to review their medical records and work with staff and physicians to correct inaccuracies?

o Are patients and families provided with practical information on how to best assure safety in health care?

o Are there a variety of support programs and resources for patients and families, including peer and family-to-family support?

o What kind of information is the organisation providing about the services, its structures and functioning? What are the main channels of information provision?

• Education and training Programs: An ongoing training and skills development of

staff is required to take the employees on board while moving towards person centred approaches.

o Do orientation and education programs prepare staff for person centred approaches?

o Are service users involved as faculty in orientation and educational programs?

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• Research: ongoing support to service development can be provided by research that considers the aspects of person centeredness and developing of quality standards.

o Do service users participate in shaping of the research agenda, implementation of research, analyzing data and dissemination of results?

At meso level you will have to identify main avenues of services you are planning to provide. An analysis of strengths and weaknesses can help you. Additionally you should see with other local actors and service providers to see what possibilities of cooperation exist.

E. Planning of PCAs

Based on the assessment of needs, capacities and requirements of person centred approaches the planning has to involve all actors. Planning can be either an integral part of regular service development or be initiated as a specific activity to enhance the service. It should take the principles of PCA into consideration when choosing the relevant strategies:

• Individuality: How can the individuality of service users be respected at all stages of the process to become more person centred? Where are interfaces for service users to interact with the service provider?

• Holistic understanding: Which activities are required to support the service in taking a holistic perspective that considers the person, its environment and the social environment relevant for the person?

• Autonomy: At what stages has the service to improve its provision mechanism to empower users for more autonomy in the implementation of services?

• Interaction: How can the interaction between staff members, service management, service users and organisations representing service users be improved?

• Empowerment: What role does the service take in empowering the service users and their environment as independent and active users?

The main steps in making services more person centred some minimum requirements are needed. These requirements have to ensure that the chosen strategies are person centred and not completely dominated by service management and staff:

• Setting up of steering committee: The planning of person centred orientation has to be carried out with the involvement of different actors and especially service users. The steering committee has to consist of representatives from service providers, service users and ideally decision makers. From the side of service provider’s management and staff level should be included to ensure that the processes are supported by all levels of the organisation.

• Definition of objective and indicators: On the basis of the assessment, priorities and central elements for person centred approaches have to be defined. The joint group of actors has to draft objectives with clear definitions of what shall be achieved during the person centred process. The objective has to be

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accompanied with clear indicators of what shall be achieved and the relation to person centred approaches.

• Choice of strategies: In Chapter Strategies for implementing PCA strategy examples are described that can be used. It is important to choose strategies that service staff is already familiar with and that corresponds to existing duties. By taking familiar strategies the support of staff can be improved.

• Planning of resources: The planning of resources includes time, financial, material and human resources. Especially the resource time is important in terms of duration and space for all staff members.

• Development of quality standards: Quality management is becoming more and more important in many countries.

• Definition of participation milestones: During the planning participation milestones should be defined. These milestones serve as interaction points between the service provider as well as the service owner that serve the monitoring and evaluation processes. They are related to the objective and the achievable indicators.

• Action plan: Depending on the size of the organisation, the services provided and the environment it can be difficult to lose track of what shall be achieved. An action plan can be a tool to combine the findings, objectives, steps to be undertaken and responsibilities. The action plan is a guide that makes the developments transparent to service users and staff equally. Make sure that these concepts are integrated into your organization’s mission, philosophy of care, and definition of quality.

The plan should be oriented along the principles of PCA, access to services and if possible consider quality standards.

F. Monitoring and evaluation

According to the assessment and the planned activities the process should be monitored by the steering group. Mein elements of interest in this process should be the objective and indicators that have been defined, respecting the participation milestones and oversight of the strategies. During this process it is most important to ensure that the participation of service users is ensured. There are some tools that can ensure their participation:

• Meetings of the steering group • Setting up accompanying focus groups for service users and community • Developing clear processes that have the service user participation as central

elements • Ensuring accessibility at all levels such as physical infrastructure, gender

sensitiveness, and transparent information, easy to understand information, different languages and others.

Besides these points the monitoring and evaluation has to respect general project cycle rules.

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In a box: Knowledge transfer

In order to reach the actors relevant for PCA knowledge has to be available and their awareness has to be raised. This includes the provision of information through resources, information portals or awareness raising events (See Chapter Strategies). The aim of awareness raising is to meet the information needs of the different groups of actors. Service users are informed about the improvements in access to service and how the services can better address their needs. Service providers receive information and initial tools of action on how to change their way of providing services, whom to involve, the main goals of PCA and the possible impacts on their work. For decision makers the main focus lies on how the PCA fits into the landscape of services under their responsibility, how the existing system can be enhanced and what resources have to be mobilized.

In a box: Participatory mechanisms

Central principles of PCA are the holistic understanding of the individual living context and the relationship between the service user and provider. The involvement of different actors into service provision has to be ensured at organisational and individual levels. At organisational level the setting up of a steering group or committee with relevant actors is good possibility to ensure users’ and persons’ direct involvement into service delivery. These groups or committees can also be in place at lower levels depending on the size of the service provider.

At least the service users and local decision makers should be involved in this kind of groups. Their roles, rights and responsibilities have to be defined in accordance to the national framework and vision formulated during the inception of person centred process development. The principles of access to services (See Chapter Planning of PCA at organisational level) and human rights can assist the group or committee members to find a mutual agreement of the objectives. The character can change during the process, as long as the previously mentioned principles are respected.

Applying person centred approaches depend on the situation. Through the planning circle they can be either implemented from scrap (e.g. in a completely new set up of services) or gradually applied in a service that is already up and running. Within the knowledge resources of HI there are publications available that can facilitate the different phases of the process. The core publications are:

• Personalized social support • Access to services • Support to Organisations Representative of Persons with Disabilities

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III. Strategies for implementing PCAs

There are different strategies that can be used to promote and develop person centred approaches. These strategies can be used either within the planning cycle or separately. The different strategies can be used to work at micro level of the organisation or service user, Besides the adjustments of the planning and implementation processes some strategies can be used. Depending on the situation they can be used to gradually change services or to support the setting up of services

A. Organisational capacity development

Organisational development mainly targets providers of services or owners of service providers. It aims at improving the overall capacity of the organisation or the service to be oriented along the abilities and needs of the person addressed through the service. This strategy ideally requires a long-term commitment of an organisation and the involvement of all levels alongside the planning cycle (See Chapter Planning of PCA at organisational level). During the assessment phase all actors have to work together to identify the main elements. In this phase the processes and structures have to be defined that are used in the planning and implementation phase. Examples of structures and processes can take different forms:

• Implement a process for all senior leaders to learn about person centred approaches. Service users, their families and staff should participate in this process.

• Appoint a service user steering committee that includes families and formal and informal leaders of the organization.

• Make use of the action plan to communicate your objective to service users and decision makers. Ensure that it is provided in an easy to understand language.

B. Increasing users’ participation in service management

The overall management of service can be enhanced by different elements that aim to increase the users’ participation. The two main levels are the participation at the general management of service and the participation in the process of individual service provision. The second kind of participation is explained in later chapters (e.g. individual rehabilitation plans, See Chapter Individual action plans).

The participation of service users but also other stakeholders can be facilitated through different methods. There is a wide range of methods that can be applied.

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Some examples are:

• Service user and community committees: Depending on the set up of service different committees can be put in place to increase the person centeredness of the service. The role, responsibility and the extent of involvement into the service of these committees has to be defined during the assessment phase. At community level committees can address actors from the group of decision makers, service users but also other service providers. At local level participation in existing committees with a similar aim are possible. There might be already similar committees that aim to coordinate service delivery (e.g. within CBR), coordinate service delivery and decision maker relations or committees with self-help groups. At service provision level committees are possible that address service users and their families. The choice of committee has to be decided between the different stakeholders and what the main use shall be.

• Audit and peer review: An effective but sensitive way to increase users’ involvement and to become more person centred are audits and peer reviews. These methods invite patients and families to serve as advisors in a variety of ways.

C. Human resources development

The inclusion of person centred approaches or the new person centred set up of services demands addressing staff of the organisation. Employees can feel intimidated or threatened by new approaches. They can come with practices that seem to question usual practices of the service. A need for new skills and extended knowledge are also demanded by person centred approaches. Human resource development has to consider employees’ worries and to address their skills development. This can happen through a range of interventions and strategies. The service management has to use the assessment and planning phases to prepare the strategies used.

• During the assessment phase leading questions can help to identify service needs. Key questions can be:

o Does the organization’s human resources system support and encourage the practice person centred approaches?

o What practices are already in place that are oriented along the person, his environment and reaching into the community?

o How do employees see access to services and poverty reduction in relation to their work?

o What are the general opinion and pattern in daily work towards the target groups?

o Which in-service policies exist promoting rights and individual aspects, addressing non-discrimination and cultural awareness?

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• In the planning phase the management has to decide which specific staff development strategies should be used. Besides general capacity building, training, awareness raising and process development some further promotion examples are:

o Reminder system for staff to focus on service users and their environment.

o A bonus system can use incentives to promote best practice in the service.

D. Quality standards development

The role of quality standards and systems in service provision is increasing. While they are not naturally related with person centred approaches they have many interfaces. Especially the link with service user satisfaction and leadership in service delivery can serve the organisation to implement quality standards.

In the process of development there should be a link to different principles when defining performance indicators. The principles of PCA, access to service but also human rights based approaches can be integrated in this process. During the assessment and planning phases they provide proposals for defining objectives and targets.

Quality development aims at improving the provided services and the organisational mechanisms. This provides many opportunities to turn services entirely or gradually into person centred services. Especially the PCA principle of relationship and interaction can be added to the organisational context in a sensible way.

The transparency of quality standards and the involvement of different actors can invite other stakeholders to contribute to the service. Quality standards and quality processes can be designed in a way that the PCA principles and the involvement of different actors become a normality of service provision.

One important element in the quality standard development is the definition of processes. As for the overall preparation of service at process level the planning steps have to be respected. One example in an intervention could be12

• Anamneses and assessment of needs: Take time to listen, discuss and understand the family situation. Use different tools and checklists to assess the abilities and needs of the person.

:

• Analyse and understanding of the anamneses: work with the person and his support network to understand the findings (e.g. medical diagnosis, assessment of employment situation) and prognosis. Demand them what has been overlooked.

• Formulation of priorities and intervention plan: set up the intervention team of colleagues, service user and support network to agree on priorities, results and

12 Franck (2011).

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goals. Provide enough time and space for families and service users to understand the process and results. If the service user has a mental disorder or intellectual disability ensure that he understands and agrees to all elements. Document the plan in a form that is understandable and he clearly agreed to it.

• Start the intervention: Define responsibilities, the role of team members, service user and family. Define specific steps of the intervention.

• Monitoring of the outcome of intervention: Monitor and evaluate the interventions in the team. Provide participation in this process for the service user and support network. Enquire about the satisfaction about the process and participation.

• Start all over again

E. Training and skills development As already remarked under the chapter for human resources training is required for making services person centred. While no specific method is required, training and skills development these should be carefully assessed and planned. It can be useful to include training on PCA into general trainings or seminars. This can provide links with other subjects and make learning process as well as skill development a normal situation of for service delivery staff.

There is no specific curriculum for PCA. Main elements for developing a curriculum should be oriented along the principles of PCA as well as access to services. The topics have to be developed in the network of actors. Five main kinds of training and awareness raising are advised to support the emergence of person centred approaches in services and the environment:

• Training of trainers (ToT) to create multipliers for PCA. • Awareness raising to create a better understanding of PCA among different

actors. • Initiating training is usually provided at the beginning of the training process on

specific topics. • Continuous professional development builds on initiating training according to

the staffs’ needs. • Coaching and mentoring in the daily patterns of work further strengthen the

ability of staff to implement PCA.

Besides clear approaches for training and skills development an organisation requires a plan and different resources. Training and seminars that do not provide reference points to everyday work tend to be seen by service staff as boring and time consuming. Management should respect some points to ensure that training and coaching is respected by the whole organisation:

• Provision of financial and material resources to organise the training. Good trainers and facilitators can make it easy for staff to acquire new knowledge

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• Staff must have the time to engage in training. If training is provided outside the regular working hours it can be seen as a burden. Solutions are to organise regular training days for different teams in the organisation or to reduce the number of working hours for individual coaching

• Training has to a inherent element of work. It has to be mentioned in the job description or contract and staff must see it as an opportunity of individual development.

F. Lessons learnt and good practice exchange Developing person centred approaches requires regarding existing practice and the joint vision. Within services and organisations valuable experience is at hand, even if it is not obvious at the offset of the process. Two ways of identifying and mutual learning are the collection of lessons learnt and the exchange of good practice. Lesson learning is a systematic process to identify specific knowledge and patterns that have been developed in a service. This process provides possibilities to analyse, explain and model these experiences, either for adaptation or replication by others, or to avoid repeating the same mistakes. Learning lessons from practice demands organisations to be transparent. There can be conflicts to what degree they want to share their experiences. Especially if a service provider has a unique intervention method that is successful tend not to share it because it is an important selling point. The primary reason for an organisation aiming to develop person centred approaches is to improve or sustain the quality its services. The lesson learning process can follow different objectives at micro or meso level. It is open for individual inside and outside the service, works with teams and the wider organisation in different ways. For example, a lessons learned process can enable13

• Individuals to objectively analyse and improve their own professional patterns of practice; to identify existing; or required skills; to transfer their individual knowledge; analyse the relationships in the service and experience to others.

:

• Service provider teams to identify and promote their common knowledge; to improve team practice; to develop group cohesion and a collective identity that follow a person centred approach; to promote project successes and share knowledge with a wider audience.

• Country programmes and the wider organisation to replicate good practice in various contexts; to learn from failures and mistakes; to institutionalise good practice; to influence the behaviour, relationships or activities of external actors and organisations; to link person centred approaches with advocacy and empowerment; to create tools for advocacy; to justify the organisation’s actions and strategic choices.

The objective of lesson learning is to obtain a better understanding of how something successful worked. This understanding can serve as a base to replicate good and functioning practice either in the existing service or for other services. Based on lessons learnt mutual learning processes can be initiated. This exchange can take place in a 13 Adapted from Guy, M ([2014]): Learning Lessons from experience.

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multitude of settings within a service or within a group of actors. They can be combined with trainings, conferences and forms of virtual learning. Good practice examples can be disseminated to share organisational innovations that work for actors. The focus can lie on specific elements such as processes that made service provision easier, which strategies they used to promote PCA or what positive effects the application of PCA had on the service. Practical experience can be further build upon through the development of guidelines development. Drafting of practice manuals and tools to implement PCA within different types of services and environments can create a pool of knowledge that is accessible for different actors.

G. Empowerment and capacity development Empowerment increases the capacity of individuals or groups to make choices and to transform those choices into desired actions and outcomes. This process builds on individual and collective assets and improves the efficiency of the organisational and institutional context. Empowerment builds the abilities of marginalised groups to improve their living situation and impact on institutions14

Empowerment within service

. Empowerment is a complex process with many different elements that go beyond person centred services. In the context of PCA it wants to strengthen users, their families and representing organisations to become active users that can determine what service they want. Often service users with disabilities have internalized negative image of disability and are passive recipients of service. Here empowerment serves the purpose to assist them to become active in the design of their service and interventions. Empowerment can be provided to a certain extent by the service provider. Often it is a better choice to cooperate with actors in the local context. If CBR initiatives are active they can provide an opportunity to empower users.

Services that established committees with service users as members can build on their expertise for empowerment of users. They should be able to judge which measures are required in the service to enable active user participation. Some measures could be:

• Easy to understand information is provided to service users at different stages • An ombudsperson is in place and service users know how to get in touch • A complaint system is used by the service • Service users and families are conscious about the plan of the intervention • Feedback questionnaires for users on satisfaction

Empowering elements in service provision have to be used carefully. There can be the danger that empowerment is used as an alibi by service management to show how well the service is running. Also some staff tends to see string and active users as difficult because their participation can be understood as questioning the competences of staff.

14 Geiser (2012): Support to Organisations Representative of Persons with Disabilities.

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Empowerment in the local context The review of CBR resulted in a new structure and a wide understanding of rehabilitation. Empowerment got a strong role within CBR. The experiences with CBR since the 1970ies showed that the role of target groups is extremely important for the success of interventions. Therefore the CBR matrix includes a component on empowerment with five elements15

• Advocacy and communication shall increase the ability to speak out for one. This requires support to build their self-esteem and confidence.

:

• Community mobilization means the engagement of all community actors for persons with disabilities. This can be related to poverty reduction and the creation of participative structures and processes at local level.

• Political participation demands that all citizens have the right to be heard as rights holders. To realize this right decision makers and civil society have to cooperate. Often persons with disabilities are stripped of the legal capacity and this is often widely accepted in society.

• In self-help groups persons with disabilities can meet with their peers and relatives to share experience. These groups also support the building of self-esteem and confidence.

• Disabled People’s Organisations became important entities that made persons with disabilities heard. They promote and protect their interest and are actors at local, national as well as international level.

Services and organisations aiming to become person centred can make use of these CBR elements. During the assessment phase links with self-help groups and DPOs can be established for cooperation.

H. Individual action plans The Individual Action Plans (IAP) are a tool aiming to coordinate and plan the available state and non-state services for people with disabilities to enable full participation in social life. The IAP can be a central tool to plan services between providers, considering individual realities and the social environment. It should integrate rehabilitation plans from other state and non-state actors. The IAP is no additional tool but shall include all relevant information on support services and enhance additional, mainly non-state, support services. Examples of the IAP can be found in the Appendices.

The structure of the IAP should reflect the individualized social, medical and rehabilitative support to have a person centred orientation. In order to be relevant and usable for referral services and service providers the following structure is suggested:

1. Basic information on the person: Name, address, social security number, insurance number, passport and social passport numbers. These information have to be handled carefully to respect national legislation on data protection.

15 WHO (2010): CBR Guidelines: Empowerment component.

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2. Anamnesis of the participant (incl. individual and socio-economic environment): this assessment will have to be conducted by the social workers with the aim to identify the current living situation and livelihood of the people with disabilities, their support needs and possibly the existing support

a. Analysis of individual wishes and situation (education, level of activity, level of passivity, existing skills, endurance, reliability, perspective on life)

b. Analysis of the family environment and family/neighborhood support to the people with disabilities

c. Livelihood of the people with disabilities and the family d. Potential employment and business opportunities resulting from

neighborhood and family contacts e. Determination of the individual support needs to achieve the highest

degree of independence (transport, activity support needs, learning support, social support)

3. Collection of existing information on social support: a. Review of existing social, medical and rehabilitative support b. Review of informal social support

4. Setting of individual IAP objectives a. Setting of objective and achievable results: description what the individual

objective and foreseen results achieved by this IAP shall be. b. Definition of success criteria c. Description of opportunities resulting if the IAP is followed

5. Determination of required support needs (description table) a. Participation in different sectors and every day social life b. Learning and skills development support c. Transport d. Medical and rehabilitative support e. Social and coordinating support f. Mentoring support (e.g. in case of conflicts)

6. Determination of service providers (description table): Description who is in charge of which service

7. Responsibilities, planning and monitoring a. Support service activity plan b. Monitoring tools

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The process of developing the IAP involves few steps.

Steps for Individual Action Plans

Task In charge 1 Identification of people with disabilities as

project participants according to identification criteria

Service provider or referral entity

2 Assessment of participants for anamnesis Service provider or coordination body

3 Alignment with other plans Service provider or coordination body

4 Determination of support needs Service provider or coordination body

5 Referral to other services Service provider or coordination body

6 Planning of services provision Service provider or coordination body and relevant service provider

8 Implementation of PCA services in the network of actors

Service provider or coordination body and relevant service provider

I. Specific contexts and target groups

Person centred approaches usually address regular service provision or implementation of projects. Within the local context they can be developed and linked at local level in cooperation with other actors. This chapter will describe target groups that can be challenging for service providers (persons with mental health problems), challenges in different cultural or intercultural contexts and post-emergency situations.

J. User groups with special demands The groups of users with intellectual impairments and with mental health problems are often regarded as challenging user groups. Persons belonging to these groups might be labelled with the attributes of being difficult, complicated or unable to understand. PCA provide opportunities to include components into service provision that make the work with these groups easier.

Intellectual impairments are life-long limitations of the cognitive or intellectual capacities. They affect the abilities of understanding, self-expression, can influence the personal development and influence the interaction with the environment. Intellectual impairments can range from learning impairments to profound impairments. Persons with intellectual impairments can have problems in communicating, understanding, remembering, recognizing or reacting. They require more time than other persons for understanding and can forget things easier.

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Mental disorders come with different names. Common are names such as mental impairment, psychological impairments or mental health problems. Mental disorders include a broad range of appearances. These can be depression, anxiety disorders or post-traumatic stress disorder (PTSD). Also dementia or Alzheimer can be considered as mental health problems. Type and duration of symptoms vary from person to person and can include fears, personality changes, confused thinking or difficulties in coping with day-to-day life. People with mental health problems may need mental health care, medication and/or psychological support. The symptoms of mental illness can completely disappear through medication and/or psychotherapy, and mental illness can sometimes be cured. Both groups have to be carefully separated from each other. Mental health problems are no intellectual impairments. Yet, persons with intellectual impairments are vulnerable to mental health problems. Persons from both groups often suffer from similar social reactions:

• Lack of awareness about mental health and intellectual impairments. People often believe that both are rare. In fact mental health problems affect more than half a billion people worldwide. Persons with intellectual impairments are most often the largest group among disabled people.

• They are a danger for society: Just a small proportion of persons with mental health problems can be violent. On the contrary this group of population is more vulnerable to violence and aggression.

• Persons with intellectual impairments are not capable of judgment: For many decades they have been stripped of their legal capacity. They are put under guardianship with specialists making judgments for them. They are able to judge and make decisions if they have accessible information and support persons that can help them filtering the relevant information to make decisions.

Person centeredness can help services to make service more accessible for these target groups. Some elements specifically can help to open up services:

• Include intellectual impairment and mental health into the strategies to make services person centered. Already during seminars and awareness raising staff can be prepared for these user groups.

• Creating links with self-help groups in the community and invite them for joint seminars and conferences.

• Make mental health an element of the service mandate in policy and vision. • Accessible information in writing and images can explain core service elements

to persons with intellectual impairments. • Anamneses can trigger that processes can be longer if an intellectual impairment

or a mental health problem have been identified. • Separated key resource persons can receive training in mental health and

intellectual impairment. They can be seconded to staff that is working on cases with persons from these target groups.

• Make individual rehabilitation plans matter for service users. Besides the detailed version for service staff a shortened version for service users can be created and signed as an annex to the service agreement. It must be available in an

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understandable version for the service user and at any time they must be able to recognize that they agreed to it (e.g. their signature, a personal statement or images important to them).

Different organizations provide advice for service how to make services accessible for these target groups. The HI policy paper on “Mental health in post-crisis and development contexts” provides more guidance on available resources.

K. Intercultural aspects Person centred approaches address micro and meso levels. They aim to consider the full range of human development and human relations and take the perspective of the individual person. This perspective can be misunderstood in different cultural and intercultural context. The emergence of the PCA in Western countries might create the impression that person centeredness equals individualistic vision of the person. Culture is commonly understood as a set of common beliefs, values and attitudes that is generated and kept alive by a group of people. Central are the ways of communicating and acquisition of knowledge. It can encompass different layers such as a nation, a sub-group of persons, a family or in organizations. Important sub-sets of culture are workplace and learning cultures. Workplace culture is characterized by shared values, team effectiveness, a commitment to continuous learning and improvement and transformational leadership. Learning cultures describe the common grounds of how learning is conducted in a group.

Individualistic versus collective cultures Individualistic cultures show a strong orientation towards the self of its members. The identification with a group mentality is less important than the realization of the individual goals. The links between members are looser and the emphasis lies on individual achievements. Individualistic cultures have a low distance between the person and decision makers and a low-context communication style. The distance between society members and decision makers is low. Members are encouraged to participate in decision making. Communication in individualistic cultures is direct, specific and not formal. These two characteristics can often result in situations where conflicting interests compete with each other. Collective cultures show preference in identification with a social network. The interests of groups prevail over the realization of individual goals. Links and solidarity within a group are strong, which is reflected in protection of members of the group. There is a big distance between the individual and power. Interests in society are negotiated between different groups the aim to reach a consensus that give a mature inter-dependence. On first sight person centered approaches have larger intersections with individualistic cultures than with collective cultures. The focus on the person and his individual development indicate these common grounds. The role of the individual situation and the importance of relation between the professional and the service user are indicators for the mutual similarities.

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Despite these similarities person centered approaches do not contradict collective cultures. The principles do not go against the main characteristics of collective culture. The focus on the individuality means that any intervention has to build on the abilities and needs. These have to be seen in the context his living situation through a holistic understanding. Here the social determinates and the direct environment of the person has to be considered. The importance in considering the individual in the context of his social environment the individual aspirations and social demands can be captured for the setting of objectives that correspond with individualistic and collective cultures.

Intercultural questions Service providers are often confronted with users of different cultural backgrounds. Cultural difference can mainly become visible through differences in religious belonging, ethnic origin, individualistic or collective orientation or different mother tongue or dialect. Service using PCA can often include cultural differences easier than other services. While the conceptual background of PCA has interfaces for culture awareness of service provision, at a practical level further action might be required. The communicative and interactive character of PCA can provide moments of irritation that can be rooted in miss-communication. Every kind of behaviour or interaction carries communication, verbal or non-verbal16

• Services are open to all: The main rule of person centred service provision is that all users have access. The principles of equality of opportunities and non-discrimination are the main human rights principles that enshrine the access for all.

. The specific situation of service provision is the meso-level between the micro-systems of the service provider and service user. At this meso-level it can happen that the interacting persons apply different cultural scripts deriving from their main social group they belong to. Cultural scripts are blueprints of social interaction that are based on the interaction assumptions in one cultural group. People are not aware of these cultural scripts because for them they form a reality and a reference system that enables their interaction. This is valid in individualistic and collective cultures. Intercultural challenges cannot be entirely avoided. But service providers and organisations can put some measures into place that support the staff in creating awareness about these intercultural differences.

• Create a multi-lingual environment: Language is often the easiest indicator of cultural differences. Services can create an environment where different languages are normal. This can start with information that is available in different languages, staff that is able to speak different languages or the timely availability of interpreters. Languages are not only limited to spoken languages but include sign-language or Braille writing.

• Multi-cultural team: Services can employ staff of different cultural origin to represent all ethnic groups in a society. This can serve two main purposes. Service users have the opportunity to identify themselves easier with the service provider if staff comes from their ethnic group. Staff of the service provider has

16 Watzlawick, P. (1967)

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the opportunity to enquire with colleagues about challenging situations with specific ethnic groups.

• Awareness of different religions: Religion is often a central element of culture. Service providers need to understand the different religions within the range of their service provision. Main religious beliefs should be familiar to all service staff. This includes the main habits, religious restrictions and also religious freedoms. One prominent example from Muslim cultures are women who either do not want to talk to men they do not know or are not allowed to talk to them. In such a case service providers should be able to have female staff who can serve this group. On the other hand religious freedom has equally to be accepted.

• Staff needs support to deal with challenging situations. The daily work is demanding for everyone and does not let enough time to reflect on own behaviours. Services should provide supervision and coaching for staff to develop the intercultural and –personal skills.

• Seminars and awareness trainings: Intercultural skills can be increased through trainings and awareness raising seminars provided through the overall strategy to make services person centred.

L. Emergency and post-emergency contexts Humanitarian actions that relates to the relief of human suffering, especially when there is an actual or imminent threat to life, are generally characterized by relatively short time-frames and goals. The Office for the Coordination of Humanitarian Affairs (OCHA) identified humanity, impartiality, independence and neutrality as the core founding principles guiding any humanitarian actions. Among these, the principles of humanity-all human beings are equal in dignity and rights-, and impartiality – help must be provided solely on the on the basis of need – stress the importance of universal right to assistance, so that individuals are seen in general as recipients of care. In emergency situations there is a lack of time and resources to fully apply person centred approaches. Services are not operational and staff not in place. Basic needs have to be met and the security of life is the uttermost priority. As a matter of fact, if inclusive measures are not undertaken, some individuals and groups are systematically excluded from relief services because they remain invisible during a crisis. Physical or communication barriers for example don’t allow persons with disabilities to access water and food distribution points, or to get vital information in an appropriate channel.

Disability-Inclusive Emergency Risk Management and Preparedness Four principles have been identified to ensure an inclusive design and implementation of emergency risk management measures. They are drawn from the principles outlined in the Sphere Handbook and the United Nations Convention on the Rights of Persons with Disabilities:

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• Equality and non-discrimination • Accessibility: people with disabilities should have access, on an equal basis as

others, to the physical environment, to transportation, to information and communications, including information and communications technologies and systems, and to other facilities and services open or provided to the public, both in urban and rural areas

• Participation and dignity: the right to participate in the assessment, design, implementation, monitoring of emergency interventions

• Resourcefulness and capacity: many persons with disabilities have resources and capacities to contribute to the emergency risk management; on the other hand, they have the right to receive support to develop skills to be able to protect themselves form hazards.

PCA principles in emergency preparedness (but also during the emergency and later in post-emergency situations) are applied to support the capacities and abilities of persons with disabilities and to reduce the vulnerability of communities. Capacity in the context of emergency and post emergency is a set of positive conditions or abilities which increases the ability to deal with hazards. Vulnerability is the extent to which a community, structure, service or geographical area is likely to be damaged or disrupted by the impact of a particular hazard. In practice, this can be implemented through a twin track approach: 1) By mainstreaming disability issues into task forces, vulnerability and capacity assessments, contingency planning, information (early warning systems), shelters and facilities, food distribution 2) By providing specific services to empower persons with disabilities: access to rehabilitation services, information leaflet in braille or radio campaigns, prepare early warning systems in sign language, create links with disabled people organisations, involve care givers and support personnel in preparedness.

Emergency response During an emergency, principles of PCA can be applied at the micro, meso and macro levels:

• Setting up mechanisms for the identification of the most vulnerable individuals or groups and provision of information to ensure access to both basic and –if possible-specific needs. The Disability and Vulnerability Focal Points (DVFP) are an example of such mechanisms.

• Developing basic individual intervention plans that takes into account the needs, preferences, available resources of the person is also possible and desirable.

• Encouraging referrals, collaboration with other services and monitoring when possible to provide a minimum of continuity in the assistance process.

• Training relief staff and volunteer on the key risks and consequences of potential hazards and emergency situations faced by people with disabilities, on the use of accessible communication formats to disseminate information, on non-discriminatory attitudes and practices, on the general and specific needs of people with disabilities.

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• Mainstreaming disability into any humanitarian action, both directly with support to partners and through coordination mechanisms (clusters). In particular, on areas such as nutrition and food security, water, sanitation and hygiene, housing and shelter, education and protection.

Post-emergency The importance of applying PCA principles becomes clearer, especially at the meso and macro level, from the post-emergency and early recovery stages, when the capacities of institutions and communities to rebuild and recover from crisis start to be restored. At the service provision level, in the post-emergency phase more attention is given to staff training and this is a great opportunity to include notions on PCA; detection and referral systems start to function better and efforts are made to ensure timely interventions and continuity of care, especially by strengthening community-based mechanisms and the network of existing specific services. Local actors (including DPOs), institutions and authorities are involved since the early stages of recovery and reconstruction; in this context international frameworks (such as the UNCRPD if signed by the state) are a good reference to design policies and long-term sector or multi-sector planning where principles of PCA are present.

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IV. PCA case studies

A. Good practice case study: Lebanon

Topic area Person centred approaches

Title Response to the acute needs of the children with mental health problems in the Palestinian refugee camps and gatherings of the North Lebanon and the region of Tyr, Lebanon

Involved actors Mental health service providers

Description of the context Since 2010 HI Lebanon implements a mental health project targeting children in Palestinian camps of South and North of Lebanon. HI supports mainly two partners to provide mental health services to children with a multidisciplinary and community approach. The partners’ teams are composed of specialists and community workers who are “case managers”, and the rehabilitation work is done in the centers (which are in the camps) but also at home, in very close collaboration with the child’s family and in collaboration with the school or vocational training is child is attending. A big component of the project in 2011 was on education and information sharing with the community.

Description of the good practice The experience in person centered approaches is very recent. A first introduction of the concept was conducted through general workshop in 2011 with all partners’ team members (project coordinators, community workers, specialists). An in depth workshop about application of PCA with representatives (managers/specialists/community workers) from the two teams continued this work in 2012. This allowed the identification of current person centered practices and where each centre can still improve the efforts at three levels: management, clinicians and parents’ awareness about person centered approach. The main activity areas for this year are management and parents’ awareness levels. They are interested in more research on person centered approaches, awareness in their teams and at higher level management.

Impact statements Until now the identification of real impact is difficult. A lot of work has to be done with service providers and with families attending the services but no evaluation has been conducted. Team members already adopted some changes in their attitude towards increase the families’ involvement in the whole rehabilitation process and at decision making level, which is one of the biggest challenges. They also changed their attitude when they talk about the families inside the teams. “We don’t use the term ‘the group of

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autism’ anymore, we say the group of children with autism”. Members who attended the workshop say to others: “but this is not person centered” when they take a decision not respecting the family priorities…

Facilitating factors that made this practice successful Until now an important facilitating factor was the very good relationship with our partners the service providers. Presence of community workers and managers are very important as well: community workers are close to the families through their work, so they understand well and apply already aspects of person centred approaches, managers because they can give a vision to all the team in the way work could be done through procedures improving person centeredness.

Barriers or challenges Service providers and even community workers find it difficult to give power away. The reasons can be different such as work in very difficult conditions, low budgets, fear of losing the respect of service users into the system. One example is the statement that “they [the service users] cannot decide which specialist to see first because there will be no more system anymore, it will be confusing”. The “specialist’s culture” can be another barrier. Even if specialists are taught at university to respect “the patient” and to be close to his needs, specialists are not really taught in person cantered approaches. They tend to feel that it is their role to know what the child and the family needs. They sometimes feel that families do not know what is the best for their child. This is why their participation in decision making would be difficult in their opinion. The absence of parents committees having a regulatory role with the service providers.

How does this practice demonstrate HI policy or positioning on person centred approaches? From what we know HI, in our regional office, and HQ is doing research, workshops and publishing documents on this topic.

Recommendations 1. Provision of space for discussions in the teams about PCA principles, its importance and how to apply it in their centres. Research based findings about this approach should be disseminated or, research should be funded. Awareness rising with families or persons attending the services to act as partners in the rehabilitation process. 2. Steps for the PCA promotion could be: have a strong and confident relationship with local actors, show actors what they already do as person cantered services (this will make this concept closer to their practise and will help them to appropriate the concept) Participative approach to see how person cantered approaches can be applied in their own context, with their target group, etc. A lot of work with persons attending the services should also be done for them to be partners in this approach. 3. Cooperation with other stakeholders in Palestinian Camps and in Lebanon, and with regional team and HQ to facilitate communication with other HI teams.

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B. Innovation case study: Occupied Palestinian Territories

Topic area Improving access to rehabilitation services in occupied Palestinian Territories

Title User centered approach steering committee (UCA SC)

HI standard approach • Enhance cooperation and coordination among service providers • Enhance the representation of the people with disabilities/their families in the

rehabilitation centers • Develop and improve intervention policies which support the client centered

practice Description of the context Rehabilitation service provision in the occupied Palestinian Territory (oPt) has seen some significant improvement of capacities. The absence of regulatory systems, lack of coordination amongst service providers and the political situation has a negative impact on this sector. Most of the services are run by NGOs, with external and charitable based funding. The Palestinian Authority still do not playing major role, in controlling and organizing the rehabilitation sector influenced by:

• The instability of political situation. • Lack of financial resources. • Lack of planning and monitoring systems within the health sector in general. • Lack of knowledge and skills on disability.

Service providers themselves face difficulties to meet the needs, support requirements as well as specific services that improve the quality of services for persons with disabilities. The context is characterized by negative attitudes, medically and deficit oriented approaches, unfriendly environment and unsupported policies. The authority fails to fulfil its obligations toward persons with disabilities. These are main barriers, which limit the active participation of persons with disabilities, their families and DPOs in social life and service development. Despite recent developments in the sector did not succeed to address the right of persons with disabilities and their access to services: they are mere recipients of service. Core reasons are the medical orientation of services and lack in involving persons with disabilities, their families, and with DPOs. Currently the relationship between the service providers and DPOs remain at the level of just receiving the technical support (rehabilitation programs) through the by the SP to the members of the DPOs. This limits any further growing in the relationship to the level that allow the DPOs to act as gate keeping (monitoring) the service provision.

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The significant barriers and challenges:

• Limited accessibility to rehabilitation services for persons with disabilities. • Low quality of rehabilitation services not addressing the users' needs. • Lack of quality and appropriate assistive devices. • Lack of information of persons with disabilities on services available and how to

access it. • Over all low, and poor representations for persons with disabilities, and the

limitation to access social services remain the main impact on the persons with disabilities life’s in the oPt.

Describe the good practice The steering committee follows a person centered approach. It aims to facilitate and promote the implementation of the client orientation within the rehabilitation centers that are member of the committee, as well to increase the representation of the persons with disabilities and DPOs in the rehabilitation programs. This steering committee consists of 9 rehabilitation centers and two DPOs. Terms of Reference are in place to organize the work of this committee. The committee selection process builds on the willingness of the service providers to participate. The objectives were discussed with all of them during workshop held for this purpose to raise the issue of the client centered practice importance, first as the right to people with disabilities, as well as frame work in rehabilitation. A self evaluation tool developed to measure the level of the client centered in these rehabilitation centers, the self evaluation conducted with each rehabilitation organization teams in the committee to detect the level of required intervention. After the evaluation there were agreement that all of the organizations willing to participate in the committee to help in transforming their systems toward more client centered. The UCA committee agreed on action plan to work on which was previously identified, with clear time frame, with a number of regular coordination meetings throughout the year. The UCA SC action plan heavily focusing on main five themes categories the different components of the intervention:

• User focus • Process focus • Staffs focus • Quality focus • Management focus.

Most significant changes Time is required to make the change happen, especially in the specific cultural context. Being easy to understand the client cantered approach in theory it needs hard work, positive tendency and practice. During two years of functioning the steering committee achieved little improvement, especially at intervention management level and not on the upper management level of the rehabilitation centers: The teamwork protocols improved including clear job description of the multidisciplinary teams, schedule of teamwork meetings, and schedules of users/family meetings.

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• The intervention planning starts to be shard and discussed with the clients/their families.

• Documentation systems improved and take in consideration people with disabilities/their families’ opinion.

• The cooperation and coordination level among the teamwork enhanced more regular meetings in place and, the level of cooperation with other organizations and referral centers as well improved.

• Active and effective dialogue starts between DPOs and SP (user/parents committee).

Impact statements Due to the self evaluation (the evaluation tool used to detect the level of client centered within the rehabilitation centers), which will be repeated early 2013 to evaluate the level of transformation happened, the impact cannot be provided at the current stage. Facilitating factors that made this innovation successful The increased awareness in the oPt toward the rights of persons with disability and the improvement of the disability work in comparison to 5 years ago in the oPt helped in promote the willingness of the rehabilitation centers to participate in such committee. The achievements of the international disability movement, and the UNCRPD reflections were another reason pushed forward for their motivation, Over all their motivation to cooperate with HI looking forward for building their staff capacities as well for the added value of the project activities.

Barriers or challenges As mentioned above the only significant changes happened at intervention management level and not at upper management level of these organizations. Future activities are going to address upper level management within the organizations. We do believe that these improvements need the support of the upper management level to ensure sustainability, through the development of supportive policies, monitoring systems, and quality assurance system. Recommendations: what can HI learn from this innovation? HI should continue to build on this good practice in future project, by linking other essential components to the work of this committee like the referral system, and rehabilitation standards will help in develop national policy for rehabilitation. HI and the other actors should conclude different stakeholders into this committee e.g. the Palestinian Authority to sensitize them toward their responsibility as monitor or regulatory body, to keep on these standards as one of the rehabilitation criteria in oPt.

Contact information Yahia Elziq Technical advisor oPt mission Email address: yelziq@hi-me.org

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C. Good practice case study: Tajikistan

Topic area Person centred approaches

Title Quality of Life for All-Increase Access to Social Services for Children with Disabilities and their Families in the Khatlon Region –QoL Tajikistan

Involved actors Parents, Director of the school, Teachers, Nurses and Village Leaders Description of the context Tajikistan is the poorest country in the Commonwealth of Independent States (CIS). Tajikistan ranked 125th on the Human Development Index (HDI) in 2013. From 1992 to 1997, the civil war caused significant destruction of the civil and social infrastructure. The economy of the country was devastated, resulting in high poverty levels. Despite a period of recovery growth, in 2009, 41% of the population still lived below the poverty line and 17% below the extreme poverty line (Country Briefing 2011, World Bank). Chronically under-funded, the social, education and health sectors are mostly equipped with obsolete material, lack skilled human resources as well as modernized government training programs. The health and social infrastructure is based on the Soviet system and has a medical disability understanding , which still influences these sectors. A shift towards a social or interactive disability understanding is visible. Located in Dushanbe or in the bigger cities, the few rehabilitation services for people and children with disabilities are mostly outdated, inadequate and hardly accessible. Various fragmented initiatives contribute to improving the situation especially at local levels. Persons and children with disabilities in rural areas are strongly affected by this situation and the rampant poverty. They are among the most vulnerable groups, due to the interrelation between disability and poverty, the daily discrimination and access to services. Tajikistan did not yet sign the United Nations Convention on the Rights of Persons with Disabilities (UN CRPD). Persons with disabilities are addressed in legislation on employment, education and rehabilitation. A new law on Social Protection of Persons with Disabilities (2010) and the Concept on Inclusive Education (2011) further indicate a paradigm change. These laws are hardly implemented due to the lack of funding, government policies and monitoring mechanisms in the field of disability. Not much information about persons with disabilities is available. Handicap International (HI), with the financial assistance of the European Union (EU), started a 32-months project, Quality of Life for all - Increase access to social services for children with disabilities and their families in the Khatlon region in 2011. The project aims to improve the access to services for children with disabilities by using a Community Based Rehabilitation (CBR) approach, in line with the latest international guidelines established by the WHO.

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Description of the good practice Shorukh is a 12 year old boy with a physical impairment (paraplegia). He was unable to study in the mainstream school because he was refused from the school director in reason of his impairment. Instead Shorukh has been attending a boarding school for children with physical disabilities in Hisor. Furthermore, the HI QoL Project started working with Shorukh and his family when he returned back home from this institution. He could not be included in his village’s school because due to its inaccessibility. The TAM unit members used the Individual Action Plan (IAP). The TAM unit is involved in Training, Awareness-raising and Monitoring as an outreach CBR component. They are directly in touch with children with disability and identify rehabilitation support for them. The IAP is elaborated in a participatory process along with the parents and the child aiming to develop his capacities and to include him in social life activities. In parallel the construction of a ramp begun in the school. After the IAP development and accessibility work accomplished, Shorukh was referred and included into the mainstream school. The school teachers welcomed him feeling confident and full of enthusiasm. They already received training on Inclusive Education (IE) by HI QoL technical unit. Shorukh was happy and ready to have the chance of a new beginning full of opportunities. He was encouraged to set a good example in order to give other children in similar situation the chance to do the same (peer-peer exchanges).

Impact statements According to the mother, the child was sent to a rehabilitation centre in Chorbog for intensive treatment. After that, he developed and improved his physical and social skills (interaction and communication with other people). Through the support of the HI QoL team Shorukh was admitted to school. The Government’s program on Inclusive Education facilitated this process further. As a result, Shorukh can now enjoy functional skills such as reading and writing, and by making new friends he says he feels more connected to people as part of the community (participation). He mentioned that he enjoys very much his participation in inclusive activities of the Play Corner such as playing with and helping others as well as specially working on the computer. Shorukh’s Mother relates to feel extremely happy about her child’s improvement. The fact that he is now attending school, has helped her and out from her depressive condition. This is an important notion, to facilitate carer’s wellbeing. Facilitating factors that made this practice successful A major facilitating factor in this situation was the presence of a mobile team of dedicated workers (the TAM unit) based in the community, with mandate and capacity to intervene at the different components touching the life of the child (children, family, school, community, etc) in respect of a user-centred approach. This approach was a major success factor to address the children’s needs. It is important both in the process design to ensure to be able to have a holistic approach that considers the individuality and aims to increase the autonomy. The use of assessment (IAP) and planning tools that empower all actors and increase interaction in the framework of this project, along with provision of necessary resources to address the barriers identified, facilitated this work. Addressing the social environment and community support were another important

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factor. Improved the accessibility of the school building, supporting school teachers and staff to facilitate the child’s inclusion were elements. Although Shorukh was admitted in the middle of the school year, together they managed to get him involved in most of their programs and social activities. He has peers who accompany him from his home to school. Barriers or challenges Political barriers: Due to limited knowledge of IE, disability rights and concept in Tajikistan, the child was refused by the school director. Now these barriers have been addressed thanks to sensitization and training of the teachers involved in the project. Physical barriers: The road from the house to school and the house itself are not wheel chair accessible. It was the same in the school, now it has been addressed with a ramp installed in the framework of this project. Attitudinal/ social barriers: Negative attitude of fellow children in village as well as school existed. They were overcome through awareness raising and counseling (both for village level and school). Institutional barriers: Currently no barriers in regard to accessing education are faced. The HI QoL developed a solution as described above. Economical barriers: secondary to the low income of the family and the high number of children, these barriers are maintained but the parents agreed to continue supporting Shorukh’s education. How does this practice demonstrate HI policy or positioning on person centred approaches? The experience within the QoL project is a good example of how the main principles of PCA can be taken into account. The activities pay attention to the dignity and respect of each person targeted in the project through culturally appropriate propositions (home visits, play corners), the family-based approach (listening to child and carer’s needs and perspectives) the effort to improve access to information (sensitization, practical information provided individually for referral to services) and participatory planning process for each child (Individual action plan). Those principles correspond to PCA and CBR. The positive practices identified related to PCA are finally aiming at an improved access to quality services, which is a pillar in the mission of HI. Recommendations

• Identification of all possible barriers • Provision of human, financial and logistic resources to address those barriers • Identification of community partners to address those barriers • Involvement of stakeholders at all levels • Ensure regular and close follow-up • Awareness-raising at all relevant levels, eg. For education at children, family,

school and community levels • Consulting and involving the service-user in decision-making (e.g. through IAP).

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What do actors need to do to sustain or replicate this type of person centred approaches? 1. Perform extensive need and capacity assessment in the region of intervention, involving end-users 2. Complete stakeholders mapping by visiting relevant actors 3. Ensure the needs expressed by the end-users are incorporated into the project design/ project implementation 4. Ensure to get the various stakeholders together for collaborative work around the user, providing awareness-raising or training to these stakeholders as required (especially when there is restricted access to services secondary to stigma 5. Involve end-users and their representative organizations in monitoring and evaluation of process and results). With whom you need to communicate this experience and share our recommendations? Experience and recommendations should be shared with the various stakeholders and with the service users, ideally by involving the end-users and their representative organizations in the communication and community mobilization processes.

Contact information Handicap International Branch in Tajikistan Mohd. Abu Jafar Ansary Project Manager E-mail: abujafar.ansary@hi-cis.org Skype: hiansary

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V. Appendices

A. Reference list

Bronfenbrenner, U. (1979): The Ecology of Human Development: Experiments by Nature and Design. Harvard, Harvard University Press.

Campinha-Bacote, J., (May 31, 2011) "Delivering Patient-Centered Care in the Midst of a Cultural Conflict: The Role of Cultural Competence" OJIN: The Online Journal of Issues in Nursing Vol. 16, No. 2 http://www.nursingworld.org/MainMenuCategories/ANAMarketplace/ANAPeriodicals/OJIN/TableofContents/Vol-16-2011/No2-May-2011/Delivering-Patient-Centered-Care-in-the-Midst-of-a-Cultural-Conflict.html

Chiriacescu, D (2006): Ensuring access of people with disabilities to social services: The need for regulatory mechanisms in South East Europe. Belgrade, HI

Chiriacescu, D.; Backer, M. de; Botokro, R. (2010): Access to services for persons with disabilities. Lyon, Handicap International http://www.hiproweb.org/uploads/tx_hidrtdocs/GM05_EN_04_screen.pdf

Handicap International (2010): Projet de service : Programme d'Accompagnement A la Participation Sociale (PAPS). Rabat, Handicap International http://www.hiproweb.org/uploads/tx_hidrtdocs/Projet_de_servicePAPS_2010.pdf

Institute for Patient- and Family-Centered Care (2010): Advancing the practice of patient and family centred care in hospitals: how to get started. Bethesda. http://www.ipfcc.org/pdf/getting_started.pdf

International Disability and Development Consortium (2012): Community Based Rehabilitation and the Convention on the Rights of Persons with Disabilities http://www.hiproweb.org/en/annexes/document-search.html?tx_hidrtdocs_pi1[uidDoc]=864&cHash=618f4290b9

Kiani, S.; Lafreniere, A. (2012): Training Kit: Personalised Social Support. Lyon, Handicap International http://www.hiproweb.org/fileadmin/cdroms/PSS/chapitre_A1_en.htm

Law, R. et. Al. (2003): Becoming more family centred. Hamilton, CanChild Centre for Childhood Disability Research http://www.canchild.ca/en/childrenfamilies/resources/FCSSheet4.pdf

Luhmann, N. (1989): Gesellschaftsstruktur und Semantik. Frankfurt am Main, Suhrkamp

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McCance, T., McCormack, B., Dewing, J., (May 31, 2011) "An Exploration of Person-Centredness in Practice" OJIN: The Online Journal of Issues in Nursing Vol. 16, No. 2, Manuscript 1. http://www.nursingworld.org/MainMenuCategories/ANAMarketplace/ANAPeriodicals/OJIN/TableofContents/Vol-16-2011/No2-May-2011/Person-Centredness-in-Practice.html

McCormack, B., Dewing. J., McCance, T., (May 31, 2011) "Developing Person-Centred Care: Addressing Contextual Challenges Through Practice Development" OJIN: The Online Journal of Issues in Nursing Vol. 16, No. 2, Manuscript 3. http://www.nursingworld.org/MainMenuCategories/ANAMarketplace/ANAPeriodicals/OJIN/TableofContents/Vol-16-2011/No2-May-2011/Developing-Person-Centred-Care.html

Relandeau, A.; Cherubini, N. ; Didier Sevet, C. ;Lafreniere, A. (2009): Personalised social support: Thoughts, Method and Tools in an Approach of Proximity Social Services. Lyon, Handicap International http://www.hiproweb.org/uploads/tx_hidrtdocs/GuideASPGBBD.pdf

WHO (2002): Towards a common language for functioning, disability and health: ICF the International Classification of functioning, disability and health, World Health Organization Geneva: WHO, 2002.

WHO (2010): Community Based Rehabilitation Guidelines - Introductory booklet. Geneva, WHO. http://whqlibdoc.who.int/publications/2010/9789241548052_introductory_eng.pdf

Worm, I. (2012): A human-rights based approach to disability in development: Entry points for development originations. Eschborn, Gesellschaft für Internationale Zusammenarbeit

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B. Sactisfaction survey – Mobile rehabilitation team

Questionnaire intended for children and families benefiting from the Together Differently project

Criteria to be met by the person interviewed

The child has been seen by the mobile rehabilitation team (MRT) for at least 3 months.

The person interviewed is either the child’s caretaker (parent, relation, family friend, etc.) or the child him or herself, if he/she is able to understand the questions and express him/herself.

Researcher’s text: Hello, my name is................. I work for................................. as a ...............................….. We are conducting a survey into personalised social support and the mobile rehabilitation team as part of the Together Differently project.

Would you be willing to answer a few questions? It will only take 15 minutes. The questionnaire is anonymous.

Please feel free to make any comments. I’ll make a note of them. Thank you very much.

Date of first MRT visit:

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Quality of the service delivered by the mobile rehabilitation team (MRT)

To rate the quality of the service, answer by “yes” or “no”

1 Did the therapist greet you? Yes Not

always No

2 Did the therapist ask you questions about the child’s illness/condition?

Yes Not

always No

3 Did the therapist allow you to ask him/her questions to help you understand the child’s situation?

Yes Not

always No

4 Did the therapist explain the treatment s/he was going to give the child or the device s/he was going to make?

Yes Not

always No

5 Did the therapist show you any exercises to do with the child?

Yes Not

always No

6 Did the therapist involve you in the treatment? Yes Not

always No

7 Did the therapist give you any explanations about the exercises you should do with the child?

Yes Not

always No

8 Did the therapist explain to you how to use the device / technical aid / wheelchair / chair?

Yes Not always

No Not applicable

9 Did the therapist explain when the next visit would take place?

Yes Not always

No

10 Did the therapist respect appointment dates and times?

Yes Not always

No

11 Did the therapist show respect to you and the child?

Yes Not always

No

12 How long did you wait for MRT services before the first visit?

Very short Short Long Too long

13 How long was the MRT support scheduled to last? ( a duration or “don’t know”)

14 What do you think about the duration of the MRT support?

Very short Short Long Too long

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Comparative study of the situation before and after the MRT service

To rate progress, answer by “Much better than before”, “Better than before”, “Same as before”, “Worse than before” or “Not applicable”

15 What do you think of the way your child’s condition has progressed since the start of the MRT support?

Much better

Better Same Worse Not applicable

16 How well do you understand and accept your child’s impairment and needs?

Much better

Better Same Worse Not applicable

17 How is your child’s impairment accepted by his/her family?

Much better

Better Same Worse Not applicable

18 Does your child take part in family life? Much better

Better Same Worse Not applicable

19 Does your child participate in daily activities (dressing, washing, going to the toilet, eating, etc.)?

Much better

Better Same Worse Not applicable

20 Does your child communicate with other people?

Much better

Better Same Worse Not applicable

21 What changes have there been in his/her functional autonomy? Moving around, gestures, etc.?

Much better

better Same Worse Not applicable

22 What progress has been made with the technical aid: wheelchair, crutches, etc.

Much better

Better Same Worse Not applicable

23 What changes have there been in the child’s health?

Much better

Better Same Worse Not applicable

24

Does your child take part in the life of the community and neighbourhood (religious or spiritual activities, social clubs, scouts, other clubs or associations, etc.)?

Much better

Better Same Worse Not applicable

25 Does your child take part in leisure activities (sports, indoor games, group games, artistic or cultural events, etc.)?

Much better

Better Same Worse Not applicable

26 How is he/she doing at school? Much better

Better Same Worse Not applicable

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33 What negative things can be said about the MRT service?

34 What improvements could be made to the service?

35 What other services do you need that you have not received?

36 I would recommend the MRT service to my entourage?

Yes

No

Why?

Quality and adaptation of the equipment provided

Answer by “Very good”, “Good”, “Quite good”, “Bad” or “Not applicable

27 How does the equipment look? Very good

Good Quite good

Bad Not applicable

28 Is the equipment adapted? Very good

Good Quite good

Bad Not applicable

29 What priorities were set with the MRT?

30 What is the biggest change that the MRT team has brought to your child’s life?

31 What is the biggest change that the MRT team has brought to the parents’ life?

32 What good things can be said about the MRT service?

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C. The child individual (personalized) plan form

Number of registration: -------------------------------------

Date of registration: ------------------------------------------

Name of institution and its address -------------------------------------------------------------------

1. Full name of the child --------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------

2. Date of birth --------------------------------------------------

3. Number, date of passport issued, child birth certificate --------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------

4. Permanent address\address, tel. -----------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------

5. Child interest and abilities ----------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------

6. Age of child development -------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------

7. Assessment of child needs:

• Physical, sensorial and cognitive needs ----------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------

• Affective and psychological needs ------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------

• Social needs: in and out the family (participation to house activities, school, leisure) ----------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------

• Medical needs -------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------

• Family needs ----------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------

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• Needs of the child and the family at community level -----------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------

• Parent’s expectation regarding the service action -----------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------

• Child’s expectation regarding the service action -----------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------

8. The child rehabilitation and development activities, including prevention and referral

• Child physical, sensorial and cognitive development activities Rehabilitation activities and services

Executor Duration (time) Expected result

• The child psychological development activities Rehabilitation activities and services

Executor Duration Expected result

• Child social and education development activities Rehabilitation activities and services

Executor Duration (time) Expected result

• The child medical rehabilitation and development activities Such activity is carried out with an active collaboration with the medical institution where the child is registered and getting medical treatment/consultation. Only primary health services should be provided.

Rehabilitation activities and services

Executor Duration Expected result

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• Support to the family/community and family‘s participation to the child rehabilitation programme

Rehabilitation activities and services

Executor Duration Expected result

Duration of the present IAP = ----------------------------------------------------------------------------------------------- Date of completion (filling up) --------------------------------------------------------------------------------------------- Filling up by -------------------------------------------------------------------------------------------------------------------- Signature -----------------------------------------------------------------------------------------------------------------------

61

D. Social assessment form

What kind of problem do you have in your life (Complaint/comment of the client or client's family)

Name of client ____________________________

Nickname ______________

Code __________

Disability _________________________ Year of birth: ____________ Sex: _____________

Village: ___________ Commune: ________ District: ________________ Province: ________

Date form filled in: ___________________

Name of interviewer:

_________________________

Title of interviewer: _____________________

Place form filled in: __________________

PRC Client's home

Other (Please specify) _____________

Place of birth:

Length of stay at current house:

Marital status:

Married Single Divorced Separated Widowed

Any comments:

Number of children:___________________________

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What do you think are the main causes of these problems?

What have you or your family done to try and solve the problems?

Client history (based on the lifeline)

(Genogram)

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Family/community information (use the geonogram tool)

Whose house are you living in?

Who is there in the family to support or help you in the family and community?

Spouse Children Parents Wat Friends Neighbors

Other relatives

Comment:

Do you have difficulties with other people in the community? Yes No

If yes, whom do you have difficulty with?

Parents relative neighbour Friend Teacher

Medical staff Community worker Others

Comment:

What difficulties does the client's problem cause for the family?

Strengths of client (interests, techniques, skills, hobbies and relationships)

64

Livelihoods (also fill in poverty assessment criteria for a complete picture)

Name of each household member Client should be 1st

Relation to client

Age Responsibility/livelihood activities (including paid and unpaid occupations and studying)

Total number of people in the household __________

not contributing to household livelihood _______

number contributing to household livelihood _______

number hsehld members in school/studying _______

number of disabled people ______

number ofchildren under 10 years old _______

number over 60 ________

number of Sick ________

Household sources of cash income

What other work have you done in the past?

65

Education

If adult:

# of years in school

Can read Yes No

Can write Yes No

Education If child

Currently in school Yes No

If yes what level?

Current position in class:

Can you give details of any skills or training you have

Do you receive financial assistance from anyone?

yes no

if yes: government pension NGO Private Other

Please give details:_______________________________

How much per month/year?_________________________________________________

Health

Do you have any difficulty with your health?

yes no

if yes what is the difficulty?

Did you go to:

Hospital Health Center Traditional healer others no

Have you ever had to sell land or things of value in order to pay for treatment?

yes no

if yes give details:

66

E. Disability, social inclusion, community rehabilitation and assistive technology triage form Date: .......................... HI Registration Number: ................................

Full Name: Sex M F UN Number

Date of Birth: Age Place of Birth

Social status: Single ( ) Single parent ( ) Married ( ) Separated ( )

Widow/er ( ) Divorced ( )

Year/month of arrival in this camps

Number of years in camp(s) (including previous camp)

Ethnicity

Mother's Name Father's Name

Care giver(s) Phone Number of contact person

Address (in camp)

Address (Neighboring Thai Village /

Cross Border Burma)

House.

Number. Zone Section

Village Name

Camp District Province

Before impairment:

Role(s) of the client

Tick one or more

school student,

income generator, What…...……….

care giver to other

home maker

family member

community work, What……….........

religious actor, What………..………

Current:

Role(s) of the client

(present)

Tick one or more

school student,

income generator, What…...……….

care giver to other

home maker

family member

community work, What……….........

religious actor, What………..………

other ………………………………….

67

other ………………………………….

Referred From: When referred:

Cause of Problem?/How did it begin?

Client perspective (what is caused your impairment?):

Clinical perspective:

High fever Accident Stroke/CVA From birth/Congenital Mine Injury

Illness/disease what?………………. Nutrition problem Unknown

other, describe ……………………………………………………….………….………….

When did it happen?

Where did it happen?

Camp

Burma

Thai village

Border

Other, describe……..…..

What were you doing when it happened?

(if not relevant, put N/A )

Type of impairment(s): (tick one or more boxes)

Visual impairment: Adults: difficulty seeing even if wearing glasses. Children: do not follow a moving object with their eyes and/or by turning their head eg follow your finger if you move it across the front of their face. Do you have/need glasses? yes no: Blind: blind both eyes (not able to see at all) yes no Describe

Hearing impairment: Adults: difficulty hearing even if wearing a hearing aid. Children: do turn head to look for you when you call their name or make a sound behind them?

Deaf: not able to hear at all. Describe:

Communication problem: problem using spoken words not due to not understanding or hearing spoken words.

Mental impairment: Difficulty with interpersonal relationships. Covers a vast area of illnesses but may suffer from feelings of sadness, anger, and aggression. May struggle to hold a job and may have difficulty with differences between personal thoughts and reality: consider referral to appropriate agency for support: health, psychosocial etc.

Intellectual impairment: difficulty learning material that is age appropriate. May have trouble with completing daily tasks and difficulty in learning skills for work or school.

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Physical impairment: difficulty moving, standing, sitting, walking or climbing steps that has lasted more than three months, Children: compared to other children of the same age has difficulty rolling over, sitting up, crawling, standing, walking, running or jumping.

Diagnosis: physical impairment only

Amputee side:………..……. Level…………….. Hemiplegia side:……………..….

Fracture:………..……. Level…………….. Polio Clubfoot side ………………...

Spinal cord injury : paraplegia quadriplegia

Cerebral palsy Developmental delay Arthritis Back pain

Deformity: part of body…………………………… Other, describe…………………………………

Client /care giver perspective:

Is the problem changing?

Improving, Getting Worse, About the same

Explain:

HI Staff perspective (if existing client):

Is the problem changing?

Improving, Getting Worse, About the same

Explain:

Do other family members or relatives have a similar problem?

Yes Who?

No

Treatment/ interventions and protection issues:

Medical History: do you (child/adult) have any other medical conditions?

(Note: physical, psychological and mental health, etc; information provided by person or medical record.)

Yes If yes, please describe:

No

Have you (child/adult) received any medical attention?

Yes What?

Where

No Why? Did the doctor/medic/ nurse ask you to take any medication?

Yes What? Why?

No

Did the traditional practitioner ask you to take any medication?

Yes What? Why?

No Do you take any medication at the moment?

Yes What? Where from?

No Why?

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Do you have any problems with bladder or bowel or menstruation?

Yes If yes, please describe:

No

Have you received any rehabilitation and assistive devices?

Yes What?

No Where from?

Does anybody provide any social/emotional support to you?

Definition: visits or appointments with the psychosocial team, or social support from professional, religious, community volunteers or neighbors.

Yes

No

Who?

Where

If yes, what kind of support?

Do you (child/adult) receive food ration every month?

Yes If no, please describe:

No

Note: Does person with a disability appear malnourished? HI staff perspective only.

Do you have any feeding/swallowing problems?

Yes If yes, please describe:

No

Do you participate in a supplementary feeding program?

Yes Please describe:

No

Do you need any specific assistance for transport? Note: Consider transport in or out side camp consider physical, social, and cognitive needs, etc.

Yes If yes, please describe:

caregiver assistance seating support

travel in wheelchair special seat

No

Family and environment diagram and analyses:

Note: identify if any significant role of care giver. If high complete the care giver form.

Family diagram

House or environment around

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Open questions:

1. How do you spend your day? (Some example follow up questions, what?, how? , how long ?, do you like?, who do spend time with?, etc.) Aim of this Q: to gain relationship, to encourage client to be open to talk with us and help us to understand the lifestyle of person.

2. How do you manage daily activities such as moving around your shelter, bathing, washing, eating, drinking, toileting, and dressing yourself, etc.?

3. Please describe your relationships with your: (Some example follow up questions; do you have somebody to discuss your feeling? how many friend do you have your age and gender? what kind of activities do you with them? how often? etc.):

- Family: - Neighbours: - Friends:

4. How are you involved in the social life of your community? (Some example follow up

questions; do you attend the events in camp, community activities e.g. religious activities, traditional events, etc.)

5. What are the priority issue/s you would like to look at over the next three months (maximum of 5)?

HI staff members’ impression:

Indicators at triage/after assessment (case manager to complete in full; for all indicators record “a”, “b”, “c” or “99”; for children under 12 years old identify indicators as relevant).

Activities Record Protection Record

Drinking / Eating* Shelter suitability

Toileting Receiving food ration*

Dressing Family support*

Carrying an object Participation and inclusion of client Record

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HI Response:

Emergency response immediately if possible, at least within 24 hrs. SGBV, child protection or any other violence and abuse related issues.

Rapid response within 2 weeks, one or more “c” for key indicator(s)*

Medium response 2-4 weeks, one or more “b” for key indicator(s)*

No response, only “a” for key indicators* and HI staff consider there is no meaningful input

*Key Indicator a b c

Drinking/eating:* Independent Supervision at a distance with some verbal prompts

Physical assistance or constant and close supervision

Moving around outside house:*

Independent Supervision at a distance with some verbal prompts

Physical assistance or constant and close supervision

Sitting Able to go to school (<18 yrs) OR income generation Activity (IGA), Vocational Training (VT) or Livelihood activities (>18yrs)*

Standing

Moving around inside house Join community life: leisure, sport, visit neighbours

Moving around outside house* Community attitudes

Age: < 12 yrs or/and recently sustained impairment: <3 months*

Circle Household tasks: cooking, sweeping, repairs, childcare

c 99 Able to access information

Body structure & function Record Interact with other people in the environment

Depression/Grief/Loss

Muscle Strength Participation and inclusion of main care giver

Record

Joint mobility Able to go to school (<18 yrs) OR income generation Activity (IGA), Vocational Training (VT) or Livelihood activities (>18yrs) *

Cognition/communication Record

Ability to learn or relearn

Communication Able to access information

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Client or main care giver

Able to go to school (<18 yrs) OR VT or IGA activities (>18yrs):*

Able to participate and learn OR do not need

Able to go (but quality of participation and learning not good)

Attend Special Education school or teacher home visits and meeting some of the child needs (reported by the parents)

Not going

Attend Special Education school or teacher visit but not meeting the child needs (reported by the parents).

Receiving food ration:* Receive full ration every month or family have resources to sustain themselves

Receive part ration every month and family do not have resources to sustain themselves

Do not receive and family do not have resources to sustain themselves

Family support:* Satisfied

Good relationship with family.

Not bad/not good

Some conflict, family not supportive, but no neglect or violence evident.

Not satisfied

Evidence of violence towards the person with a disability or neglect.

Age: < 12 yrs or/and recently sustained impairment: < 3 months:*

99 99 If a person fulfils this criteria always record as “c”

Name of CR staff :______________________ Signed:_______________________________

Name of AT staff :______________________

Signed:_______________________________

Name of DSI staff : _____________________

Signed:_______________________________

Name of CR advisor: ____________________

Signed:_______________________________

Name of DSI advisor ____________________

Signed:_______________________________

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Monitoring: Indicators at three months

Date: ..........................Client Name:……………………. HI Registration Number: ................................

Indicators at triage/after assessment (case manager to complete in full; for all indicators record “a”, “b”, “c” or “99”; for children under 12 years old identify indicators as relevant).

Activities Record Protection, Record

Drinking / Eating* Shelter suitability

Toileting Receiving food ration*

Dressing Family support *

Carrying an object Participation and inclusion of client Record

Sitting Able to go to school (<18 yrs) OR income generation Activity (IGA) , Vocational Training (VT) or Livelihood activities (>18yrs)*

Standing

Moving around inside house Join community life: leisure, sport, visit neighbours

Moving around outside house* Community attitudes

Age: <12 yrs or/and recently sustained impairment: <3 months*

Circle Household tasks: cooking, sweeping, repairs, childcare

c 99 Able to access information

Body structure & function Record Interact with other people in the environment

Depression/Grief/Loss

Muscle Strength Participation and inclusion of main care giver

Record

Joint mobility Able to go to school (<18 yrs) OR income generation Activity (IGA) , Vocational Training (VT) or Livelihood activities (>18yrs)*

Cognition/communication Record

Ability to learn or relearn

Communication Able to access information

Name of Case manager :______________________ Signed:_______________________________

Date: ................................

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Indicators at triage/after assessment (case manager to complete in full; for all indicators record “a”, “b”, “c” or “99”; for children under 12 years old identify indicators as relevant).

Activities Record Protection, Record

Drinking / Eating* Shelter suitability

Toileting Receiving food ration*

Dressing Family support *

Carrying an object Participation and inclusion of client Record

Sitting Able to go to school (<18 yrs) OR income generation Activity (IGA), Vocational Training (VT) or Livelihood activities (>18yrs)*

Standing

Moving around inside house Join community life: leisure, sport, visit neighbours

Moving around outside house* Community attitudes

Age: < 12 yrs or/and recently sustained impairment: <3 months*

Circle Household tasks: cooking, sweeping, repairs, childcare

c 99 Able to access information

Body structure & function Record Interact with other people in the environment

Depression/Grief/Loss

Muscle Strength Participation and inclusion of main care giver

Record

Joint mobility Able to go to school (<18 yrs) OR income generation Activity (IGA), Vocational Training (VT) or Livelihood activities (>18yrs)*

Cognition/communication Record

Ability to learn or relearn

Communication Able to access information

Name of Case manager :______________________ Signed:_______________________________

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F. Rehabilitation action plan

INTERDISCIPLINARY TEAM MEMBERS NAMES

Name:

Position:

Position: Rehabilitation Workers -Technical Aids Technicians -Outreach

Rehabilitation Workers -PT/OT

CLIENT INFORMATION (to be copied from database sheet)

Ration card n°: ____________; Individual Number: ____________, HI’s file number: _____________ ; Name of the client: ___________________________; Gender: F/M; Age: 0-4, 5-17, 18-59, 60+; Family member present: Name: _______________________ Gender: F/M; Relationship: ________________

Current address: CAMP: SECTION: BLOCK: Shelter: Phone number: 1°______________; 2°______________

Date of RAP: ___/___/___ Date of 1°follow-up: ___/___/___ Date of 2° follow-up: ___/___/___ Date of 3° follow-up: ___/___/___

The long term goal must consider and reflect the main expectation of the client & family. Long and short term goals must be SMART (Specific, Measurable, Achivable, Realistic and Time-bound) Long term goal:

Short term goals:

Means and Treatment activities Rehabilitation Worker

Technical Aids Technician

Outreach Rehab Workers

Daycare:

Client / Family

Other:

Short term goals 1

Short term goals 2

Short term goals 3

For agreement and commitment to implement this Rehabilitation Action Plan: Client and / or parent signature: Rehabilitation team representative signature:

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G. Personal plan

Date: .......................... Client Name: ………………………………………….……………. HI Registration Number: .........................

GOAL

No Priority issues and goals

Steps and resources to implement

Responsible CR, AT, DSI, client, care giver

Scheduled completion/ review date

Completed on/ issues affecting completion

1.

2.

3.

4.

5.

Agreement: Mr/Ms ……………………………. agrees to accept the support offered and to do everything possible to achieve the goals identified in the plan. Handicap International agrees to provide the services proposed and identified in the plan. Duration of the contract: This contract takes effect on………………for an initial period of three months following which a review will be conducted to assess and agree next steps. Name of client:_________________________ Signed:_______________________________ Name of Case manager:__________________ Signed:_______________________________

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Review at … months: …………………………………. Date: ……………………………………………….. GOAL

No Priority

issues and goals

Steps and resources to implement

Responsible CR, AT, DSI, client, care giver

Scheduled completion/ review date

Completed on/ issues affecting completion

1.

2.

3.

4.

5.

Agreement: Mr/Ms ……………………………. agrees to accept the support offered and to do everything possible to achieve the goals identified in the plan. Handicap International agrees to provide the services proposed and identified in the plan. Duration of the contract: This contract takes effect on……………… for an initial period of three months following which a review will be conducted to assess and agree next steps. Name of client: _________________________ Signed: _______________________________ Name of Case manager: __________________ Signed: _______________________________

Person-Centred Approaches

HANDICAP INTERNATIONAL14, avenue Berthelot69361 LYON Cedex 07

T. +33 (0) 4 78 69 79 79F. +33 (0) 4 78 69 79 94publications@handicap-international.org

This document is internal to Handicap International.

It is a first step towards defining Person Centred Approaches (PCAs) and how these might be applied or operationalised across Handicap International’s programmes.

In particular this document builds on some valuable experience on PCAs developed by Handicap International in the Middle East and Central Asia, in the sector of physical and functional rehabilitation.