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Pilot Project of Personal Assistantfor persons with the most profound type and degree of disability

Croatia

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UNDP is the UN’s global development network, ad-vocating for change and connecting countries to knowledge, experience and resources to help people build a better life. We are on the ground in 166 co-untries, working with them on their own solutions to global and national development challenges. As they develop local capacity, they draw on the people of UNDP and our wide range of partners.

Brief segments of this publication may be reprodu-ced without change, without the author’s approval, provided that the source is mentioned.

The views expressed in this publication are those of the authors and do not necessarily represent those of UNDP.

Copyright © 2008.

Publisher: United Nations Development Programme (UNDP) in Croatia

Radnička cesta 41, 10000 Zagreb, Croatia

Authors: Aida Bagić, Maja Bošnjak, Jasmina Papa

Graphic design and cover: Krešimir Kraljević

Print: Ldk

Printed in Zagreb, Croatia

First edition 2008

ISBN: 13 978-953-7429-12-6

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Foreword

Dear readers,

It is my pleasure to present to you a publication containing the results of the evaluation of the pilot project of Personal Assistant for Persons with the Most Profound Type and Degree of Disability, on the occasion of December 3, 2008, the International Day of Persons with Disabilities. The results confirm a high degree of user satisfaction with the personal assistance services provided, and there is a clear need to enshrine such a service in the national legislation. The Ministry of Family, Veterans’ Affairs and Intergenerational Solidarity has been implementing the project for three consecutive years, in cooperation with associations of persons with disabilities. Personal assistance services have been provided to 338 persons with the most profound degree of disability, in collaboration with 64 associations of persons with disabilities, in the area of 19 counties of the Republic of Croatia, with a total of 26,894,334.13 HRK reserved for that purpose during the previous period. The evaluation report sheds light on the attitudes of persons with the most profound degree of disability, personal assistance users, personal assistants and project leaders. This Report will be an additional incentive to better understand the role of personal assistant and the need for the personal assistance service.

It is the task of every country to assist vulnerable groups and individuals who are unable to satisfy their needs either independently or with the assistance of their family, and to harmonise the interests of the individual, family and society.

The Ministry of Family, Veterans’ Affairs and Intergenerational Solidarity, in collaboration with the relevant state admini-stration bodies, scientific institutions and associations of persons with disabilities, is preparing the expert foundations and appropriate legislative proposals with the purpose of introducing personal assistance for persons with the most profound degree of disability. Introducing personal assistance will enable the active inclusion of persons with the most profound degree of disability in all structures of community life, with respect for each person’s right of choice and their value system.

The International Day of Persons with Disabilities is an opportunity to promote personal assistance in the system, since it constitutes a strong link in providing support for persons with disabilities. Assistance covers activities of daily living involving self care, as well as activities connected to raising children, or travel. The service user has the opportunity to independently select an assistant, and to decide on the content and method of service provision, which puts users in the role of “employers” for the first time. Providing personal assistance to persons with disabilities allows for independent living, which is very important for the enjoyment of human and civil rights. Parents have the opportunity to engage in caring parenthood, while children can have a happier upbringing. This service ensures the fulfillment of the basic principles of independent living for persons with disabilities, such as independence and self-determination. There is no doubt that the family is the core unit of society, and that each family member, irrespective of their physical or mental status, deserves to have their dignity respected and their basic human rights and good family relations secured; this is additionally ensured through the introduction of personal assistance into the user’s family. The services of personal assistance are particularly important for those persons with the most profound degree of disability who live alone.

The evaluation report on the Pilot Project of Personal Assistant for Persons with the Most Profound Type and Degree of Disability is a result of a joint collaboration of the Ministry of Family, Veterans’ Affairs and Intergenerational Solidarity, and the United Nations Development Programme (UNDP) in Croatia. I thank all those who participated in the pilot project of Personal Assistant, as well as the Office of the Resident Representative of the United Nations Development Programme (UNDP) in Croatia, and I wish to extend my gratitude to all collaborators who have contributed to the creation of this Report.

DEPUTY PRIME MINISTER AND THE MINISTER OF FAMILY, VETERANS’ AFFAIRS

AND INTERGENERATIONAL SOLIDARITY

Jadranka Kosor

Foreword

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ContentForeword

Summary

1. Introduction

2. Personal assistance: the definition and context of public policies for persons with disabilities

3. Project implementation: responsible entities and key activities

4. Project from the users’ perspective

5. The project from the perspective of personal assistants

6. Project leaders in the associations: the management perspective

7. Overview of the accomplishments and obstacles from the perspective of interviewed stakeholders

8. Personal assistance – from project to rights

8.1. Comparing personal assistance with similar services

8.2. Possible ways of introducing personal assistance into the system

8.3. Concluding remarks

Appendix

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Content

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Summary This report contains the results of the evaluation of the “Pi-lot Project of Personal Assistant for Persons with the Most Profound Type and Degree of Disability”, which the Minis-try of Family, Veterans’ Affair and Intergenerational Soli-darity (MOFVIS) has been implementing together with associations of persons with disabilities in the Republic of Croatia since March 2006. The key goals of the evalu-ation were to assess the effectiveness of the project in terms of achieving project goals, and to determine the success of its implementation. Specific goals referred to determining the effect of personal assistance on the users, and to estimate their satisfaction with the service; to estimate the level of skills and knowledge of the service providers, i.e. personal assistants; and to estimate the efficiency of the overall service and the effectiveness of the current monitoring and evaluation system for the service. Additionally, within the evalua-tion we had to prepare a comparative analysis of per-sonal assistance and existing assistance services within the social welfare system, as well as create recommen-dations for a draft of the legal framework which would make personal assistance one of the rights of persons with disabilities.

At the request of the Directorate for Family of MOFVIS, and in accordance with the Cooperation Agreement signed in May 2008, the United Nations Development Programme (UNDP) team conducted the evaluation. Data collection, analysis and preparation of the first draft of the report were conducted between August 18 and October 1, 2008. Findings presented in the report are based on an overview of project documentation and additional resources (including strategic national documents relevant for persons with disabilities), the polling of users and personal assistants, as well as on semi-structured interviews with project lead-ers in associations, and with representatives of other project stakeholders. In the course of the evaluation more than 120 persons were consulted, either directly included in the project, or in other ways familiar with the issue of personal assistance.

Personal assistance - definition

Personal assistance (or personal aid) refers to assistan-ce (aid) to the user in those activities that such a person would otherwise undertake alone, were it not for sensory, physical, mental or intellectual disability (Ratzka, 1997). This includes assistance in the activities of daily liv-ing, such as dressing or fulfilling physiological needs, shopping or preparing meals, as well as assistance in the upbringing of children, at work, or during travel. What makes personal assistance specific in compari-son with other forms of care or treatment is the fact that the assisted person independently decides on the work content and the manner of assistance (du-ration, frequency, etc.). Rather than being the object of assistance (aid), the person with a disability is the active subject in this relationship.

Personal assistance – international legal documents and national strategies

The introduction of personal assistance into national legislation, meaning public policies whose aim is the social integration of persons with disabilities, is fore-seen in international documents such as the Standard Rules on Equal Opportunities for Persons with Disabilities (Resolution 48/96) and the United Nations Convention on the Rights of Persons with Disabilities. The Republic of Croatia, as the fourth country to have ratified the Convention in 2007, also accepted the obligations stemming from Article 19 (“Independent living and inclusion in the community”), where personal assis-tance is emphasised as a special service necessary “to support living and inclusion in the community, as well as to prevent isolation from, or segregation within the community”. Personal assistance also has a prominent role in the Council of Europe Action Plan for Promoting the Rights and Full Participation of Persons with Disabilities in Society, and is one of the priority tasks among policy measures aimed at persons with

Summary

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disabilities, as foreseen in the Joint Memorandum on Social Inclusion of the Republic of Croatia. This makes the introduction of personal assistance a relevant in-dicator of how the Republic of Croatia is fulfilling the obligations undertaken in the context of internation-al legal instruments for the protection of the human rights of persons with disabilities.

Furthermore, personal assistance is also relevant as a means of operationalising the goals of the National Implementation Plan for Social Inclusion, particularly with regard to expanding the social service network, developing the system of non-institutional services, and improving the services, the key priorities being the deinstitutionalisation and decentralisation of social services. The Republic of Croatia recognised personal assistance as a key mechanism for the in-tegration of persons with the most profound degree of disability in the National Strategy of Consolidated Policy for Persons with Disabilities 2003-2006 (Official Gazette 13/03). This was also confirmed in the The National Strategy for Equalisation of Opportunities for Persons with Disabilities 2007-2015 (Official Gazette 63/07), which also foresees that the “Pilot Project of Personal Assistant for Persons with the Most Profound Type and Degree of Disability “ be used as a basis for a legal provision which would introduce personal as-sistance as one of the rights of persons with the most profound degree of disability..

“Personal Assistance Pilot Project” - goals, implementation and results

1. To ensure high-quality needs satisfaction for persons with the most profound degree of disability, with the purpose of achieving inde-pendent living;

2. To determine the criteria for selecting personal assistance users;

3. To determine the criteria for selecting personal assistants;

4. To analyze the needs of persons with the most profound degree of disability;

5. To determine the number of such persons;

6. To determine the level of funds needed for the introduction of personal assistance into the legislative framework; and

7. To create the foundations for the proposal of legislative provisions.

MOFVIS’ key partner in implementing the “Pilot Project” was the Croatian Union of Associations of Persons with Disabilities (CUAPD), in charge of train-ing potential users, assistants and personal assis-tance project leaders in basic associations. The main mechanism for financing personal assistance within the project was the tender procedure, which was used to provide the basic associations of persons with disabilities with funds based on the number of users approved. As users of personal assistance, the associations could recommend persons with physi-cal disabilities, deafblind persons, blind persons, and deaf persons with additional difficulties who need practical assistance in self care. Users were able to select personal assistants independently, or through the mediation of the association, provided that the assistants were unemployed and in good mental and physical health, with completed secondary ed-ucation, or with completed primary education and additional training.

In three competition cycles, MOFVIS provided al-most 27 million HRK to the associations, with the number of associations and users growing each year. The project was implemented throughout the territory of Croatia, and during 2006 it covered 78 users from 25 associations in 14 counties; in 2007, the number increased to 176 users from 49 associa-tions in 17 counties; and in 2008 it increased to 338 users from 64 associations in 19 counties. The proj-ect covered 362 persons with the most profound degree of disability in the three years of its imple-mentation. Men and women were almost equally represented among the users (178 men and 184 women), whereas men were underrepresented in the group of personal assistants (only 86 men in a total of 335 assistants).

The positive effects of personal assistance reflect almost equally on users, personal assistants and the wider community. When it comes to users,

Summary

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the evaluation’s empirical findings confirm that the availability of personal assistance facilitates the performing of daily activities and contributes to social inclusion; eases the burden faced by the families of persons with disabilities; contributes to the widening of the social network; contributes to positive changes in mood, physical appearance and fitness, and in the perception of one’s own disabil-ity; positively impacts relations with other people, particularly in terms of increased trust and readiness for communication. Both users and personal assis-tants believe that the pilot project has contributed to their acquiring new skills and knowledge, and to positive changes in the social perception and atti-tudes towards persons with disabilities in the wider community. An additional value of the project that needs emphasis is the employment of members of social groups distanced from the labour market (e.g. women and the long-term unemployed).

Personal assistance significantly contributed to the high-quality satisfaction of the needs of those per-sons who had a chance to participate as users in this project. When seen in the continuity of almost an entire decade, which is how long personal assistance has been implemented in Croatia - first through the “Independent Living” project, thanks to the initiative of associations of persons with disabilities, and then through the “Project of Personal Assistant “ which is the subject of this evaluation - we can say that the policy of small steps and constant collaboration of civil society organisations, government institutions, and other interested stakeholders has accumulated the knowledge and experience necessary to estab-lish personal assistance as one of the social rights of persons with disabilities. In that respect, the re-sponsible stakeholders in this project managed to fulfill its task, namely, to create the foundation for the proposal of legal regulations.

Options for introducing personal assistance into the system of rights of persons with disabilities

Comparing personal assistance with other forms of assistance for persons with disabilities stated in the Law on Social Welfare (basic disability allowance, unemployment compensation, assistance and care supplement, in-home assistance and care, right to receive care outside one’s family, and counsel-ling services), or with specialised forms of assis-tance that are being introduced into other systems (education and employment), revealed the need for additional coordination and collaboration be-tween different systems in order to provide high-quality, timely, just and efficient services to users with complex and changing needs. In this context, there seem to be possibilities for certain elements in the system to accept the personal assistance model, with certain additions, and regulate it as a right. Here it is important to emphasise that the key underlying aspect of the current system is the require-ment that persons with disabilities prove a high de-gree of incapacity, in order to enjoy social rights, bene-fits and services. On the other hand, the philosophy of independent living, which is indivisibly linked to personal assistance, focuses primarily on the capacity of persons with disabilities.

When it comes to the possible ways of introducing personal assistance into the system, decision makers should define the following aspects: a) characteris-tics of the service users of who, in line with relevant legal provisions, have the right to the service; b) the content of the service and its position in one of the existing groups of services, distinguishing it from similar services, and clarifying which services are mutually exclusive; c) basic structural and functional characteristics of service providers (which legal en-

Summary

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tities can provide this service; employees’ qualifica-tions and employment contracts, space, founding legal documents for the legal entity; and/or the type of contract signed with the relevant body, the method of accreditation, etc.); d) the decision maker on the right to the service; e) mechanisms of financ-ing individual users, or the overall activities of the service provider.

Ad a) The evaluation team proposes that the defi-nition of personal assistance users be expan-ded so that it covers persons with intellectual difficulties, as well as those with severe forms of psychiatric disorders (taking into considera-tion that such persons need intensive support in performing daily activities like self-care and social participation),and that a holistic approa-ch to users’ needs assessment be developed (ta-king into consideration the types and intensity of support needed in various aspects of indi-vidual functioning, with a detailed analysis of physical and social environmental factors, sin-ce interaction with these factors can facilitate a person’s self-care and social participation, but it can also seriously thwart them).

Ad b) Personal assistance might be introduced as one of the rights in the social welfare system, or as one of the modalities of in-home assistance and care. The institution proposing the introducti-on of the right to personal assistance into the system should decide whether, and in what way, the fulfillment of the right to personal assistance would influence the parallel use of other rights (e.g. the right to the assistance and care supplement, certain modalities of care outside the family, etc.).

Ad c) When it comes to service providers, the Law on Social Welfare foresees the plurality of servi-ce providers. Those issuing the proposal should decide which entities should be responsible for providing the service. Here it is possible to consider existing organisational forms (family centres, centres for social welfare, associations, possibly also assistance and care centres), or

establishing new ones (agencies or centres for independent living or personal assistance). In reaching that decision, an estimate should be made of the costs of establishing the new sy-stem in relation to the costs of strengthening the current system.

Additionally, it is necessary to develop quality standards for service provision, and determine the creators and those responsible for mecha-nisms for monitoring the quality of the provi-ded services, user and personal assistants trai-ning providers, as well as decide on a body that would mediate between the users and perso-nal assistants in conflict situations, or in cases of breach of contract.

When it comes to quality standards for service provision, the provider should also have clear criteria for the selection of personal assistants. As was the case in the pilot project, a personal assistant should, in addition to good mental and physical health, also have completed se-condary education, or at least completed pri-mary education with additional training. Perso-nal assistants should have the opportunity to undergo continuous training, and their work ought to be monitored by the organisation securing the financial means, and by the user. Given the key role that the users have in equip-ping assistants for their duties, training persons with disabilities as employers is also extremely important.

Ad d) There are three possible options when it co-mes to the decision maker regarding the right to the service.

Option 1: Integration into the existing system

Given that the entity responsible for selecting users of services similar to personal assistance is the ministry in charge of social welfare, and given that the decision on that matter is rea-ched by the relevant social welfare centre, as in the case of obtaining the right to all other services in the social protection system, the transfer of the personal assistance service into the system of rights could follow the existing

Summary

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procedure. Experience gained through the pilot project could be included in the system so that the working bodies in charge of expert evaluation within centres for social welfare are trained on the working methods used by the expert working groups that determined the criteria for personal assistance users in the pi-lot project, and so that the protocols currently used by working bodies for expert evaluation within the centres for social welfare are revised so as to allow for a holistic assessment of users’ needs. The assumption here is that an already existing expert evaluation body would require fewer funds, being a well established mechani-sm which could be improved with additional staff and introduced with holistic approaches to needs assessment. Experts with user experi-ence in personal assistance should certainly be included in its work. Establishing a completely new body for expert evaluation with the pur-pose of realising the right to personal assistan-ce would likely increase the cost of introducing personal assistance into the system.

Option 2: Under the competence of MOFVIS, with the Ministry of Health and Social Welfare (MHSW) as collaborating body

Given the fact that the pilot project was de-veloped within MOFVIS, and that MOFVIS can use family centres to perform expert duties pertaining to “disability related issues”, alongsi-de prevention and counselling it is possible to advocate the idea that MOFVIS, i.e. the family centre, be the one to decide on the right to personal assistance. However, that would go against the principle stating that the needs assessment of persons with disabilities sho-uld be based on a holistic approach within a single methodology, and the principle that, in deciding on one or more rights of individual users, all available forms of support be taken into account in order to select those types of support that are most adequate to the context of the current life situation of a potential user. To respect this principle to some degree, this particular option should by all means: a) use

the same expert evaluation body and the same methodology as the centre for social welfare; b) apply the same methodology in examining cases as that prescribed for the work of centres for social welfare when deciding on the right to personal assistance; c) obtain the agreement of the relevant centre for social welfare for each individual case in which the family centre deci-des on the right to personal assistance.

In such a division of duties, the obligation of the centre for social welfare, in addition to providing agreement, would be to inform the family cen-tre and the user about the implications that the use of this particular right has on the user’s other rights in the social welfare system.

The issue of selecting and supervising service providers, as well as supervising personal assi-stants, ought to remain under the competen-ce of MOFVIS, but the decision review and the matter of further service use could be partially under the competence of MHSW. The above-mentioned tasks might also be performed in some form of partnership between the cen-tre for social welfare and the family centre. This would put into effect the conclusions of the Report on the Implementation of the Jo-int Inclusion Memorandum, where the chapter on the “Strengthening and Preservation of the Family” states that the cooperation between MOFVIS and MHSW needs to be strengthened for the purpose of implementing this measure.

Option 3: Law on personal assistance

Given the fact that MOFVIS has been imple-menting the pilot project, the proposition of a separate Law on Personal Assistance is also possible. In doing this, it must be taken into account that this is a type of social service, and that, even if a separate law is created the obli-gations of the two ministries or social welfare institutions under their competence have to be regulated with regard to the organisation and implementation of the service. It is also important to examine how a separate law wo-uld reflect upon similar services in the educa-

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tion, labour, and employment systems. Based on the insights from the evaluation report, it seems justified to propose that the possibility be considered of forming a single expert eva-luation body for adults, regulated through the Law on Personal Assistance and whose work would be based on holistic needs assessment, taking into consideration the experiences of the expert working group with regard to the selection of users in the personal assistant pilot project.

The criteria for realising the right to personal assistance need revision with regard to the ho-listic approach to needs assessment, but also regarding the scope of users. The regulation of the right to personal assistance entails the widening of the circle of users to include per-sons who are not members of associations, but also deciding whether persons other than tho-se with physical disabilities can use this right, such as persons with intellectual difficulties, or persons with psychiatric disorders.

This option also anticipates the need for regu-lating the obligations and the relation of family centres as service organisers/implementers to centres for social welfare, and other persons and legal entities. As in Option 2, if no single expert evaluation body is formed the findings of which would inform the process of determi-ning the right to personal assistance, it is cru-cial that cooperation be established with the existing expert evaluation bodies at centres for social welfare.

In addition, it is necessary to anticipate the po-ssibility of subcontracting individual aspects of the implementation, especially for those associations which have strengthened their capacities for that type of work within the pilot project. In that case, the selection and supervi-sion of service providers would remain under the competence of MOFVIS. MOFVIS should develop quality standards for the provision of the service, and regulate the supervisory me-chanisms, as well as mechanisms for resolving complaints. This could be regulated through a separate statute or decision.

Summary

Ad e) Finally, when it comes to financing the ser-vice, the State Budget should continue to be the key source of funds, since the possibility of crea-ting adequate mechanisms of service provision should not be subject to discrepancies between county and city budgets. Those proposing the introduction of personal assistance should give additional consideration to the option of mul-tiple methods of securing the service, i.e. apart from direct service provision, the option of fi-nancial remuneration could be offered. Namely, in countries with developed systems of perso-nal assistance two dominant models are appli-ed: direct transfer of funds to the user, with the obligation of specified use of funds, and transfer of funds to the service implementer, as was the case within the pilot project.

The recommendation given to MOFVIS is to request additional processing of the existing data from the Croatian Register of Persons with Disabilities according to the criteria of user selection applied within the pilot project. That data, along with the average cost per user within the pilot project as a basic benchmark, could form the basis for evaluating the total cost of financing the introduction of personal assistance into the system.

Introduction

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1. Introduction

This report contains the results of the evaluation of the “Pilot Project of Personal Assistant for Persons with the Most Profound Type and Degree of Disa-bility”, which the Ministry of Family, Veterans’ Affairs and Intergenerational Solidarity (MOFVIS) has been implementing since March 2006, in collaboration with associations of persons with disabilities in the Republic of Croatia.

Key goals of the evaluation were to evaluate the ef-ficiency of the project in terms of achieving project goals, and to determine the effectiveness of the implementation. Specific goals referred to determi-ning the effect of personal assistance on the users, and evaluating their satisfaction with the service (particularly with regard to the performing of daily activities and the possibility to participate in commu-nity life); estimating the level of skills and knowledge of service providers, i.e. personal assistants; evaluating the effectiveness of the entire service (advertising/competition, criteria for participation, contracting, financing the service and comparing two possible fi-nancing models); and the effectiveness of the current system of monitoring and evaluating the service.

Additionally, the evaluation included the prepara-tion of a comparative analysis of personal assistance and existing support services in the social welfare sy-stem, in the context of decentralisation and dein-stitutionalisation as defined in the Joint Inclusion Memorandum of the Republic of Croatia, as well as recommendations for the draft of the legal framework which would make personal assistance one of the rights in the catalogue of the rights of persons with disabilities.

At the request of the Directorate for Family of MO-FVIS, and in accordance with the Collaboration Agreement signed in May 2008, the United Nations Development Programme (UNDP) team conducted the evaluation. Members of the evaluation team

were Jasmina Papa, Project Manager of the UNDP project Social Inclusion and Persons with Disabiliti-es, together with Aida Bagić (M.Sc. in Political Scien-ce) and Maja Bošnjak (B.A. in Psychology) as external consultants engaged by the UNDP solely for con-ducting the evaluation.

Data collection, analysis and preparation of the first draft of the report were conducted between August 18 and October 1, 2008. The findings presented in the report were based on:

1. An overview of the project documentation (Ap-pendix I: List of project documents)

2. An overview of additional resources, including strategic national documents relevant for persons with disabilities (Appendix II: References)

3. Surveying of users and personal assistants (Ap-pendix III: Questionnaires for personal assistant users and personal assistants)

4. Semi-structured interviews with project leaders in associations, and with representatives of other project stakeholders (Appendix IV: Guide for inter-views, Appendix V: List of interviewed persons)

In the course of the evaluation, over 120 persons were consulted, either directly involved in the project, or familiar with the issues regarding personal assis-tance in some other way.

Report structure

The report begins with a chapter outlining the de-finition of personal assistance with a brief overview of international legal documents and strategic nati-onal documents that determined the wider context of the evaluated project. In the central part of the report, following an outline of key project activities, the project is presented from the perspectives of dif-ferent participants: persons with disabilities as users, personal assistants, and project leaders in associati-ons as service providers. At the end of these chap-ters we bring an outline of the key findings of the evaluation. In the concluding part we put forward

Introduction

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options for the systematic provision of personal assi-stance to persons with the most profound degree of disability in the Republic of Croatia, based on the evaluation findings and a comparative analysis of personal assistance and other assistance services for persons with disabilities.

Acknowledgments

The evaluation team wishes to thank all the people – users of personal assistance, personal assistants, and project leaders in associations and the Ministry of Family, Veterans’ Affairs and Intergenerational So-lidarity – whose time and readiness for collaboration contributed to the data collection for this report. We also want to thank Dr. Vesna Bošnjak for her assistan-ce in gaining insight into the systems of social welfa-re, and her suggestions regarding the development of the final chapters of the evaluation report.

Personal assistance: the definition and context of public

policies for persons with disabilities

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2. Personal assistance: the definition and context of public policies for persons with disabilities

The first model project of personal assistance for persons with the most profound degree of physical disability in the Republic of Croatia entitled “Indepen-dent Living” began in 2000 through the cooperation of the Croatian Union of Associations of Persons with Disabilities (CUAPD) and the Croatian Paraplegic and Tetraplegic Association (CPTA). The assistants in that project were mostly civil service conscripts, while the then Ministry of Labour and Social Welfare provided the financial support. The experiences of this project, together with the experiences of the international independent living movement and the international legal documents which establish the social integra-tion policy for persons with disabilities, form the basis on which personal assistance was built into the na-tional strategic documents of the Republic of Croatia. Also, thanks to the key relevant stakeholders, includ-ing first and foremost, the personal assistance users from associations of persons with disabilities, these experiences were also transferred to the “Pilot Project of Personal Assistant for Persons with the Most Pro-found Type and Degree of Disability “.

Personal assistance (or personal aid) is most frequent-ly defined as assistance (aid) “to the user in those activities that such a person would otherwise under-take alone, were it not for sensory, physical, mental or intellectual disability”.1 This has to do with assistance in the activities of daily living such as dressing, fulfill-ing physiological needs, shopping, preparing meals, as well as assistance in the upbringing of children, at

work, or during travel. The most important aspect of the definition of personal assistant is the fact that the adjective “personal” means that the person with dis-ability is the one who “decides which activities will be performed by the assistant, and when and how these services will be provided”.2 Or, as one of the found-ers of the independent living movement for persons with disabilities had pointed out when explaining the relevance of personal assistance: “I think that in this era of personal computers and personal phones, the concept of ‘personal assistance’ is described well enough”.3 The emphasis is, therefore, on the idea that the person receiving assistance is the person deter-mining the assistant’s content of work and request-ing certain activities. The person with a disability is an active subject in this relationship, rather than the object of assistance (aid).

(a) The introduction of personal assistance into national legislative frameworks, i.e. public po-licies aiming to socially integrate persons with disabilities, is foreseen in several international legal documents, as well as in relevant natio-nal strategies. Personal assistance appears in international legal documents as early as the beginning of the 1990s, when the United Nati-ons adopted the Standard Rules on Equalising Opportunities for Persons with Disabilities (Re-solution 48/96), and holds a prominent place in the Convention on the Rights of Persons with Disabilities, adopted in 2007. The Republic of Croatia as the fourth country in the world to ratify the Convention also accepted the obliga-tions stemming from Article 19 (“Independent Living and Community Inclusion”), where per-sonal assistance is highlighted as a special ser-vice necessary “to support living and inclusion in the community, and to prevent isolation or segregation from the community” (See Outline I: Personal assistance in UN documents).

1 Adolf Ratzka, “Osobna pomoć”, April 1997, www.hsuti.hr/CustomPages/Static/HRV/Files/ osobna%20pomoc%20za%20neovisni%20zivot.doc (20 Sept. 2008)2 Elena Pečarič, “Zamke profesionalizacije osobne pomoći”, article presented at the first social work congress in Portorož, 17-19 October 2002, www.hsuti.hr/CustomPages/Static/HRV/Files/osobna%20pomoc%20za%20neovisni%20zivot.doc (20.09.2008.)3 Adolf Ratzka, “Što je osobna pomoć?”

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164 Official Gazette 13/03.5 Commission of the Government of the Republic of Croatia for persons with disabilities (2005). Report on the implementation of the National strategy of Uniform Policy for Persons with Disabilities 2003-2006.; during 2003 and 2004. Available at: http://hidra.srce.hr/arhiva/10/4648/www.vlada.hr/Download/2005/09/30/102-021.pdf6 Ministry of Family, Veterans’ Affairs and Intergenerational Solidarity (2006) “PERSONAL ASSISTANT – Comparison of different countries” (source of information: Croatian Information Documentation Referral Agency—HIDRA).7 Government of the Republic of Croatia (2007). National Strategy for Equal Opportunities for Persons with Disabilities 2007-2015. Official Gazette 63/07

The Government of the Republic of Croatia recog-nised personal assistance as a key mechanism for integrating persons with disabilities in its National Strategy of Uniform Policy towards Persons with Disabilities 2003-2006.4 According to that strategy, the then State Institute for the Protection of Fam-ily, Motherhood and Youth, was to collaborate with other state bodies and associations of persons with disabilities with the purpose of preparing “expert foundations that would introduce personal assis-tance for persons with the most profound degree of disability, and propose an appropriate legal framework” by the end of 2003. After the partial restructuring of the state administration following the parliamentary elections held in November 2003, this measure fell under the comptence of the newly established Ministry of Family, Veterans’ Affairs and Intergenerational Solidarity. The deadline for imple-menting the measure was extended for one year, to the end of 2004.

In the course of the subsequent period, MOFVIS initiated the establishment of an expert working group, which “discussed and proposed definitions to establish the criteria for the right to personal as-sistant, determined the need for introducing this option with respect to different kinds of disabilities, presented material on the Swedish model of per-sonal assistant, shared experiences regarding the selection, method and procedure of realising the rights of Croatian war veterans from the Homeland War to receive nursing attendants, discussed the is-sue of the rights of persons providing care and as-sistance to Croatian war veterans with disabilities, as well as presented telling examples of the personal

experiences of participants of the Independent Liv-ing Project .”5 MOFVIS also created a questionnaire for members of the working group with the pur-pose of gathering proposals to create a draft law on personal assistance. In the course of 2005 and 2006, a comparative analysis was made of how the issue of personal assistance was regulated in sev-eral EU countries (Sweden, Denmark, Italy, Germany, Greece, Austria and Slovenia), as well as the United States and Canada.6

In early 2007, the Government of the Republic of Croatia adopted the National Strategy of Equalisa-tion of Possibilities for Persons with Disabilities 2007-2015. Personal assistance for persons with the most profound degree of disability also gained a promi-nent place in the new strategy. Evaluation of the “Pilot Project of Personal Assistant for Persons with the Most Profound Type and Degree of Disability” was thus one of the activities foreseen within the measure ensuring different forms of “high-quality, non-institutional support for persons with disabili-ties and their family members, in order to allow the freedom of choice”7. Another activity included in this measure was a special survey on the number of persons with the most profound degree of dis-ability. In 2008, MOFVIS, as an institution responsible for this measure, was to create appropriate legal documents in order to officially introduce personal assistance.

The issue of personal assistance is pointed out in other chapters of the National Strategy, especially in chapters connected to community life, housing, and mobility and accessibility, and the Ministry of

Personal assistance: the definition and context of public

policies for persons with disabilities

2

178 For example, in chapter 2.2. on Community Life, the national strategy emphasises that: “ the introduction of personal assistant signifi-cantly supports community inclusion for persons with the most profound degree of disability, giving this population the opportunity to plan their lives more independently and to become included in community life. Also, one of the activities within Measure 6, Chapter 2.6. on Housing, Mobility and Accessibility, is to “ensure access to a personal assistant for persons with the most profound degree of disability, ensure appropriate assistance to deaf, deafblind, and blind persons in the form of mediators, including guides, readers and interpreters for sign language and other forms of communication used by persons with disabilities, in order to facilitate access to public institutions and public spaces, and to enable appropriate participation in events held in such spaces.” The institution responsible for this measure is MHSW, while MOFVIS is one of several co-holders, and the implementation deadline is 2009.9 Joint Inclusion Memorandum of the Republic of Croatia, Zagreb, March 5, 2007, pp. 41-42.10 Council of Europe Action Plan to promote the rights and full participation of people with disabilities in society: improving the qual-ity of life of people with disabilities in Europe 2006-2015 : Recommendation of REC (2006) 5 Committee of Ministers to member states.11 A more detailed overview of international legal instruments relevant for this topic can be found in the introduction of the National Strategy for Equal Opportunities for Persons with Disabilities 2007-2015.

Health and Social Welfare (MHSW) is mentioned as the institution responsible for the appropriate mea-sures, alongside MOFVIS.8 Responsible institutions mentioned in the strategy include associations of persons with disabilities, associations with active programs for the benefit of persons with disabilities, the Ministry of Finance and the Croatian National Institute of Public Health, as well as other state ad-ministration bodies.

Introducing personal assistance is also one of the priority tasks among the policy measures focusing on persons with disabilities as foreseen in the Joint Inclusion Memorandum of the Republic of Croatia, which is closely linked to a focus on an active ap-proach which “means that persons with disabilities

exercise independent control over their life circum-stances”.9 The decisive role of persons with disabili-ties is also pointed out in the “Council of Europe Action plan to promote the rights and full participa-tion of people with disabilities in society”, especially in the action guideline regarding community life which focuses on maximising the independent liv-ing of persons with disabilities, and proposes “strate-gic policies supporting a shift from institutional care towards community care and accommodation”. In a range of specific activities that member states can undertake in achieving these goals, there is also a recommendation on promoting “solutions that al-low persons with disabilities to employ a personal assistant based on their own choice”.10

Standard Rules on the Equalisation of Opportunities for Persons with Disabilities (Resolution 48/96)

Rule 4: Support services

States should ensure the development and supply of support services, including assistive devices for persons with disabilities, to assist them to increase their level of independence in their daily living and to exercise their rights.

1. States should ensure the provision of assistive devices and equipment, personal assistance and inter-preter services, according to the needs of persons with disabilities, as important measures to achieve the equalisation of opportunities.

2. States should support the development, production, distribution and servicing of assistive devices and equipment and the dissemination of knowledge about them.

3. To achieve this, generally available technical know-how should be utilized. In States where high-te-chnology industry is available, it should be fully utilized to improve the standard and effectiveness of assistive devices and equipment. It is important to stimulate the development and production of simple and inexpensive devices, using local material and local production facilities when possible. Persons with disabilities themselves could be involved in the production of those devices.

Outline I.: Personal assistance in UN documents11

Personal assistance: the definition and context of public policies for persons with disabilities

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4. States should recognize that all persons with disabilities who need assistive devices should have access to them as appropriate, including financial accessibility. This may mean that assistive devices and equipment should be provided free of charge or at such a low price that persons with disabilities or their families can afford to buy them.

5. In rehabilitation programs for the provision of assistive devices and equipment, States should consi-der the special requirements of girls and boys with disabilities concerning the design, durability and age-appropriateness of assistive devices and equipment.

6. States should support the development and provision of personal assistance programs and interpretation services, especially for persons with severe and/or multiple disabilities. Such programs would increase the level of participation of persons with disabilities in everyday life at home, at work, in school and during leisure-time activities.

7. Personal assistance programs should be designed in such a way that the persons with disabilities using the programs have a decisive influence on the way in which the programs are delivered.

(Source: Mihanović, V. et al. (ed.) (1999). Standard Rules on the Equalisation of Opportunities for Persons with Disabilities/ United Nations. Public information department, State Institute for the Protection of Family, Motherhood and Youth, Zagreb)

Convention on the Rights of Persons with Disabilities

Article 19 - Living independently and being included in the community

States Parties to this Convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community, including by ensuring that:

(a) Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement;

(b) Persons with disabilities have access to a range of in-home, residential and other community sup-port services, including personal assistance necessary to support living and inclusion in the com-munity, and to prevent isolation or segregation from the community;

(c) Community services and facilities for the general population are available on an equal basis to per-sons with disabilities and are responsive to their needs.

(Source: Law on Confirmation of Convention on the Rights of Persons with Disabilities and the Optional Pro-tocol of the Convention on Rights of Persons with Disabilities, Official Gazette – International Contracts 6/07.)

Project implementation:

responsible entities and key activities

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12 Government of the Republic of Croatia, National Strategy for Equal Opportunities for Persons with Disabilities 2007-2015. (2007)13 Text of the final competition process, or public invitation, was published in the daily newspaper “Vjesnik” on March 29, 2008, and it is also available at www.mobms.hr.14 Associations from Međimurska and Šibensko-kninska counties did not apply for the 2008 tender, but it seems that there were users in those counties who got their assistants through associations in other counties.15 As foreseen in the National Strategy for Equal Opportunities of Persons with Disabilities 2007-2015, that the funds for personal as-sitance be planned annually from the State Budget. In 2008, the State Budget reserved 15,000,000.00 HRK, and 29,000,000.00 HRK is planned for 2009 to continue providing support for personal assistance.

3. Project implementation: responsible entities and key activities

Goals of the “Pilot project of Personal Assistant” were12 as follows:

- To ensure a high-quality of needs satisfaction for persons with the most profound degree of di-sability with the purpose of achieving indepen-dent living;

- To determine the criteria for the selection of per-sonal assistance users;

- To determine the criteria for the selection of per-sonal assistants;

- To analyze the needs of persons with the most profound degree of disability;

- To determine the number of such persons;

- To determine the level of funds needed to in-troduce personal assistance into the legal fra-mework; and

- To create the foundations for the proposal of the legal framework.

The responsible institution for the “Pilot project of Per-sonal Assistant” was MOFVIS. The key partner in the implementation was the Croatian Union of Associa-tions of Persons with Disabilities (CUAPD). The role of the associations of persons with disabilities within the project was in organising personal assistance service provision for their members. MOFVIS was in charge

of preparing and implementing the competition process that was used to provide funds for the asso-ciations, while the role of CUAPD was to organise the training for potential users, personal assistants and personal assistance project leaders in associations.

We will bring here basic information on the activities conducted within the project, based on an over-view of the project documentation and interviews with representatives of institutions responsible for the project.

Competition cycles

The main mechanism for financing personal assis-tance within the project were tendering or com-petition procedures, which provided funds for as-sociations of persons with disabilities based on the number of users approved for the project.13 In three competition cycles, MOFVIS provided almost 27 mil-lion HRK to associations, with the number of asso-ciations and users increasing each year. The project was implemented throughout the territory of Croa-tia, and in 2006 it included a total of 14 counties, in 2007 that number increased to 17, and in 2008 the total number of counties included was 19.14 Table 1 shows how the project expanded each year, in terms of both the territory covered and the continu-ous increase in the number of users.

Two years ago, the project was financed from part of the lottery revenue intended for activities of asso-ciations of persons with disabilities, while the funds for 2008 were provided from the State Budget.15 Maxi-mum hourly net wage, according to the conditions of the competition process, was 25 HRK, so that the maximum salary for a personal assistant - in the course of the maximum 80 hours per month - was 2000 HRK.

Project implementation: responsible entities and key activities

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16 Including administrative project costs and education costs. MOFVIS calculated the average monthly cost, taking into consideration the number of months that the users were included during a particular year (not all users were included in the project throughout the whole year).

# Number of users per county 2006 2007 2008

1. City of Zagreb 24 33 61

2. Splitsko-dalmatinska County 11 28 58

3. Primorsko goranska County 2 15 34

4. Istarska County 7 11 28

5. Osječko-baranjska County 2 8 22

6. Karlovačka County 2 9 19

7. Bjelovarsko-bilogorska County 6 11 15

8. Zagrebačka County 3 8 15

9. Vukovarsko-srijemska County 6 6 15

10. Brodsko-posavska County 3 10 14

11. Virovitičko-podravska County 6 7 11

12. Dubrovačko-neretvanska County 7 11

13. Varaždinska County 2 4 10

14. Sisačko-moslavačka County 2 8 8

15. Zadarska County 5 4

16. Požeško-slavonska County 3 4

17. Ličko-senjska County 2 3 3

18. Krapinsko-zagorska County 3

19. Koprivničko-križevačka County 3

TOTAL 78 176 338

# Total amount allocated to associations

Number of associations

Number of users

Average monthly cost per user16

2006 3,200,000 HRK 25 78 5,131.67 HRK

2007 8,700,000 HRK 49 176 4,536.63 HRK

2008 15,000,000 HRK 64 338 4,621.07 HRK

Table I.: Number of users per county (table prepared by MOFVIS)

Table II.: Overview of key financial indicators



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17 Invitation for the application of the projects of associations of persons with disabilities providing personal assistance support to per-sons with the most profound degree of disability in the Republic of Croatia for State Budget funding for 2008, March 12, 2008.18 Instruction on the preparation and implementation of the personal assistant pilot project for persons with the most profound degree of disability, Zagreb, March 12, 2008.19 “Evaluation of applied projects of Assocations and of the candidates proposed: results, methodology, procedure”, minutes from one of the Expert Working Groups, prepared by the Group president, Mr. Josip Šimičić, dr.vet.med., Zagreb, 5 May 2008.

Users – criteria and the selection process

As potential users of personal assistance the associa-tions could propose persons with physical disabili-ties who need practical assistance in self-care; deaf-blind persons, blind persons, and deaf persons with additional difficulties who need practical assistance in self-care. An additional condition to apply for the project was that “the personal assistance user was trained by the national association, and approved as a potential user”17.

Practical assistance in self-care is specified as:

- Assistance in personal care (hygiene, help in ge-tting in and out of bed, dressing and undressing, assistance in performing physiological needs, assistance in eating and drinking, meal prepara-tion, taking medications);

- Assistance in light housework (cleaning the table, papers, books, magazines, providing aid devices, turning book pages, writing, room maintainance);

- Doing the shopping;

- Assistance in physical needs (transferring from bed to chair, assistance in using the telephone, etc.);

- Administrative work – going to the doctor (re-ferral slips, relief checks, prescriptions), going to the bank or post office, delivering and submi-tting different kinds of documentation;

- Assistance in establishing and facilitating com-munication, and escorting and assisting persons in different social activities.18

During implementation, the users had to go through two selection phases. The first phase, conducted within the association, was actually a self-selection process since the users applied as members of asso-ciations either independently or encouraged by their

associations. There was even a case of a member of an association which was not part of the project in 2006, who found out about the project through the media and subsequently encouraged the association to apply in the next competition cycle.

In the second phase, the MOFVIS expert working group verified that the conditions of the competition process were fulfilled (verifying that the documenta-tion was complete, application forms filled out, that cost estimates were appropriate); that the association had the appropriate institutional capacity, and that the project description corresponded to the goals of the competition process; that the potential users met the criteria regarding the need for practical assis-tance in self-care. For each potential user associations had to submit the Barthel index which estimates the capacity for independence in fulfilling certain tasks. Other parameters were additionally considered, such as “cumulative disability in different organ systems; additional sensory, mental and somatic impairments; age, family situation, social and material status.”19

Personal assistants – criteria and the selection process

Users could select personal assistants independent-ly or through the intermediation of associations, provided that the assistants were independent per-sons in good mental and physical health (submit-ted confirmation from a physician), with completed secondary education, or with completed primary education and additional training. The competition rules stated that a personal assistant could not be someone the user had signed a private contract of life-long support with, or support until death, and that family members can work as assistants only in exceptional circumstances. The basis for excluding family members were the principles of the inde-


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20 It is important to emphasise that this principle is not universally accepted, i.e. it is not applied in all countries with a developed per-sonal assistance service.21 The full title of the CUAPD project was “Education for the implementation and monitoring of the pilot project of personal asssitant in the independent living system “. In the first year, 2006, CUAPD had 244,270 HRK at their disposal, 249,358 HRK the following year, and 306,800 HRK in the last year, 2008.

pendent living movement, namely the conviction that paid assistance by family members to persons with dsabilities, especially if the persons live in their primary families, limits the freedom of choice and creates an additional burden to family relations.20 As in the case of users, the national association was obliged to train personal assistants, and was also in charge of issuing confirmations that the person was qualified to provide personal assistance services.

Training

As mentioned earlier, the precondition for persons to be included in the project either as users or as personal assistants, was to participate in the training organised by the national association CUAPD. Train-ing was also organised for project leaders in associa-tions. According to CUAPD reports, the training held in March 2006 in Zagreb included 130 potential per-sonal assistance users, and in 2007 there were 182 (the time and place of the training was not speci-fied). Total funds granted to CUAPD for the training, monitoring, and internal project evaluation in three competition cycles were 800, 000 HRK.21

Training materials created during the “Independent Living” project - implemented by CUAPD in collabo-ration with the Ministry of Health and Social Wel-fare and with civil conscripts as personal assistants - were used in the new project, with minor changes.

The Personal Assistance Project – collection of presen-tations and other materials used in training

Zorislav Bobuš (CUAPD): Independent living – philosophy and principles

Manda Knežević (CPTA): Personal assistance user/employer/coach – an active subject

Ana Slonjšak (CPTA): Examples of assistance and communication

Branko Bizjak (Muscular Dystrophy Association Zagreb): Living alone with personal assistance

Anđelka Bistrović-Nastić (Muscular Dystrophy Association Virovitica): Personal assistance – my experience

Marica Mirić (CUAPD): Independent living – per-sonal assistant

Zvjezdana Šabanov: Experiences in working as personal assistant

Marica Mirić, Zorislav Bobuš and Manda Kneže-vić (CUAPD): Types of disability

Zorislav Bobuš (CUAPD): Social model of disability

Ljubica Uvodić Vranić: Communication: goals and difficulties, Prejudice, Pride and prejudice

Marica Mirić and Zorislav Bobuš (CUAPD): Code of ethics

Marica Mirić and Zorislav Bobuš (CUAPD): Uni-versal design as a new conceptual model

Ratimir Džanić (CUAPD): Universal design as a concept of equal opportunities for persons with disabilities

Presentation of the types, procurement met-hods, and use of aid devices, according to www.ottobock.hr

Forms and other appendices: Needs assessment and monitoring list, Barthel index, User’s social data and case history, motivation text “If you can – you must”, leaflets “Independent Living – the most powerful tool for equal opportunities”, “Per-sonal Assistant”.

Some users and personal assistants also received copies of the manual Yes, You Can Do It! (Zagreb, CPTA, 2002). This is a translation of the American manual, partly adjusted to the Croatian context, in-tended for persons with spinal cord injuries as assis-tance in coping with new situations in life caused by physical disability. The manual also includes a chap-ter on cooperation and the business relation with the personal assistant (concepts “assistant” and “fol-



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22 CUAPD’s internal evaluation included interviews with approximately 40 users and their assistants in 4 counties (Virovitičko-podravska, Primorsko-goranska, Splitsko-dalmatinska, Karlovačka), and the City of Zagreb.

lower” are used in the manual). The topics covered in the manual range from defining what is expected of the assistant and evaluating one’s own needs, ways of finding an assistant and signing a contract, to ad-vice on the training and supervision of assistants.

Presentations from the training events were planned for publication in the form of a book, but the print-ing was not yet complete at the time of the external evaluation.

Implementation monitoring and internal evaluation

At the level of associations, those responsible for monitoring and evaluating the service were the us-ers, as well as project leaders who contacted and vis-ited users and personal assistants and usually tackled minor problems through direct communication. The users were obliged to prepare the personal assistant’s work plan and to report to the project leader on a monthly basis on how the implementation process was going. Project leaders in organisations were obliged to submit narrative and financial reports to MOFVIS mid-term and at the end of the project.

MOFVIS and CUAPD were in charge of monitoring the implementation of the overall project. CUAPD conducted an internal project evaluation in July and August 2007, which noted the following elements as key achievements: the setting up of new asso-ciations by personal assistance users (including one sports association), a more active participation in the work of existing associations (work on projects, in the associations’ creative workshops), the inclu-sion of users in the project in the additional role of educator (peer counseling), new experiences (first summer vacation), a marriage; institutionalisation (admission to an institution) prevention, and consid-ering employment. Key problems were insufficient working hours and the method in which the service was contracted, so an increase in working hours and the inclusion of the vocation of personal assistant in

the official list of professions were proposed.22

In the very course of the project there were no sub-stantial modifications based on the internal evalu-ation or project participants’ feedback received in some other way. MOFVIS maintained continued communication with users and personal assistants, acquainted interested persons with disabilities with the conditions and ways of becoming involved in the project, and informed interested persons on the op-portunities and methods of employment as personal assistants. Apart from analyzing narrative and finan-cial reports on the project implementation at the level of associations and sending official letters to correct shortcomings, MOFVIS occasionally solved problems that arose during the project implementation among persons included in the project implementation (us-ers, personal assistants, and project leaders). Also, occasionally decisions had to be made on including new users in the program as replacement for users who were deceased, or for those placed in retirement homes. Additionally, MOFVIS created and maintained a database of users and personal assistants.

Basic social and demographic data about the users and personal assistants

Several illustrations will present basic social and de-mographic data about the users and personal assis-tants gathered by MOFVIS. In the total of 362 users, men and women are almost equally represented (178 women and 184 men), while men are signifi-cantly underrepresented among personal assistants - less than one third: only 86 men in a total of 335 assistants (Illustration 1). With regard to the level of training, among both users and personal assistants the majority are persons with secondary education.

Personal assistants are, on average, younger than the users. Most of them are aged between 18 and 25, while most users are in the 46-55 age group.


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100

80

60

40

20

%

Users Personal assistants

Women Men

Illustration 1: The structure of users and personal assis-tants according to gender

Illustration 3: Age of users

Illustration 4: Age of personal assistantsIllustration 2: The education level of users and personal assistants

0%10%20%30%40%50%60%70%80%90%

100%

Non-qualified, semi-qualified and qualified workers

Secondary school

Vocational 2-year tertiary education and B.A.

UsersPersonal assistants

358

101315182023252830

%

18-25 26-35 36-45

Age groups of users

Users

46-55 56-65

358

101315182023252830

%

18-25 26-35 36-45

Age groups of personal assistants

Personal ssistans

46-55 56-65

Project from the users’ perspective

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23 We point out that in 2007 the project enabled personal assistance for 176 users from 17 counties. The share of men among the users then was 53%.

4. Project from the users’ perspective

The purpose of surveying users within the evaluation of the Project of Personal Assistant for Persons with the Most Profound Type and Degree of Disability was to determine the extent of the impact of introducing personal assistance on the daily activities and social inclusion of the users, and the level of their satisfac-tion with different aspects of this service. For that pur-pose, a questionnaire was created, tested and modi-fied in the testing phase, and its final version can be found in the Appendix of this report.

The questionnaire determined the structure of the phone interviews with users, and the responses were systematised, with the person conducting the interview playing the role of administrator during the interview. Interviews were held between 8-22 September 2008. Participation in the survey was voluntary and anonymous, announced in advance, and users were free to specify the time of the inter-view. The testing technique and the sample charac-teristics were determined by the specificities of the surveyed group and by the fact that the second year

of project implementation was selected as the refer-ence framework for this evaluation.

Sample characteristics

The survey covered 50 users of personal assistance, which is 28 percent of the total number of users included in the project in 2007.23 In designing the sample, we wanted a representative sample from the 17 counties, and adequate quantitative ratios for both genders and for different disability etiolo-gies. Since a certain number of users were simulta-neously performing the role of project leaders, they were interviewed as such and were left out of the user sample. Apart from these criteria, the selection of specific respondents was random.

Tables III and IV show in detail the user sample struc-ture with regard to gender, age and employment. The questionnaire covered 27 men (54 percent) and 23 women (46 percent). It is important to note that only one person was employed and two were stu-dents, while the rest of the respondents were unem-ployed! Three of the respondents mentioned were aged between 18 and 28. Although the socioeco-nomic status of the respondents was not the object of this research, we draw from the above that 98 per-

GenderAge

Total1990-1980 1979-1969 1968-1958 1957-1947 1946 and older

Male 7 6 4 9 1 27

Female 2 5 6 5 5 23

Total 9 11 10 14 6 50

GenderAge

Total1990-1980 1979-1969 1968-1958 1957-1947 1946 and older

Employed 1 0 0 0 0 1

Unemployed 6 11 10 14 6 47

Students 2 0 0 0 0 2

50

Table III.: Sample structure with regard to the respondents’ age and gender

Table IV.: Sample structure with regard to employment


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24 The insufficient number of hours was also singled out as a problem in the CUAPD internal evaluation. The problem was also recog-nised in Ivo Biškup’s thesis “Experiences of Personal Assistance Users”, presented this year under the mentorship of Professor Zdravka Leutar from the Social Work Study Centre of the Faculty of Law in Zagreb.

cent of the sample lives on a disability pension, person-al disability allowance, or permanent social assistance. Since examinees are persons with the most profound degree of disability, we may assume that their living expenses are further increased by needs caused by their delicate health condition. Although 60 percent of respondents say that their health insurance covers the expenses caused by disability (e.g. medications, hygienic material, or aid devices), others estimate that they spend between 200 and 2,000 HRK per month for these needs. The words of one informant, who said, “It’s really an expensive sport, being in a wheelchair”, are sup-ported by many respondents who said that they “ba-rely make ends meet”, and that the price paid for these costs is a significantly decreased quality of life. Despite that, none of the respondents said that the available financial means could not cover their priority disability needs. However, these statements are relativised to a great extent by their spontaneous comments of “ha-ving to thank their family for providing important finan-cial assistance”.

Keeping in mind what was said, the answers in which respondents compare personal assistance with other disability rights are somewhat surprising. Although they most frequently note as the main difference the fact that personal assistance is not a kind of material aid, they all agree on having “received specific assistan-ce and closeness that is priceless”! Disregarding individ-ual differences in style and in the aspects of personal assistance that each informant might favour, they singled out crucial characteristics of the service, but also the personal meaning attributed to them:

“... assistance that is in line with my needs”; “I no longer think about who I have to bother, beg for a favuor, and humiliate myself.”; “You no longer depend on the environment, you’re with a person that does what is needed, to our mutual satisfacti-on”; “We have to fight bureaucracy for everything, and it’s always other people who decide – and here, we are the ones who decide”; …an assistance that I create and arrange”; “I can ask for everything I

need without feeling guilty”; ...other approaches are connected to health care”; “People plan their own time and have someone to carry it out”; “Through the personal assistant, I can express my personality and creativity”; “The assistant is always there for me, as if he/she were my own”; “He’s like my friend, and the rest is easy”; “I love and respect him”; “All the ot-her things are there to fulfill physical needs, and the assistant deals with the spirit and the soul”; “Thanks to my assistant I live like a normal woman”, “...I fun-ction as if I’m not in a wheelchair, the only thing I notice is that I have wheels”

These quotes provide an authentic introduction to examining user satisfaction with different aspects of personal assistance, and the impact it has on their quality of life.

User satisfaction with personal assistance

The average respondent rating of their satisfaction with personal assistance was at a high level of 4.38, which means that users were mostly or completely satisfied with the overall implementation of the project! The analysis of some specific aspects of the service represented in Illustration 5 shows the same tendency – with two exceptions. Namely, 9 aspects of the service were evaluated as being mostly or completely satisfactory, while satisfaction with the number of the approved working hours24 and the existing method of keeping working records were nearer to the average grade 3.

As the quoted comments suggested, the respon-dents were most satisfied with the personal assistants’ flexible working hours, i.e. adjusting the hours to the user’s needs. Although planning the tasks is indissolu-bly linked with the specific nature of the service, users express a somewhat higher level of satisfaction with the characteristics of assistants as employees than with their obligation in the role of employers.


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25 One user, due to frequent delays in arrival, broke the contract with a previous assistant.26 Two users believe that transport with the help of the association’s adjusted vehicle is more accessible to those members favoured by the heads of the association.

Responsibility, efficiency in implementing the work plan, the knowledge and skills of personal assistants, and the users’ communication with the assistants – these are the elements that the respondents con-sider completely satisfactory!

The abovementioned satisfaction is further sup-ported by the fact that none of the interviewed users had experienced any of the tasks from their work plan to be denied to them, and that users had no disagreements with their current assistants.25 Answers to these questions are usually followed by comments such as: “talking and working things out are the most important thing”.

Having in mind the intimate nature of personal as-sistance, the users’ efforts to establish good relations with the persons providing the service is under-standable. These efforts can be seen in the favour-able self-assessment of the level of tolerance and of the demanding attitude of users towards assistants. The users’ average grade in describing their flex-ibility in relation to their assistants was 4.58, which means that they perceive themselves as either mostly or extraordinarily tolerant. It is interesting to

note that none of the respondents described them-selves negatively in this respect! Self-assessment of how demanding they were in relation to their assis-tants was somewhat more severe, with an average of 3.58. In other words, the individual differences in responses to this question were greater, but most respondents see themselves as being demanding very rarely, or only sometimes. Alongside the self-perception mentioned above, the fact that the re-spondents were uneasy in assessing the adequacy of the personal assistants’ earnings confirms the users’ considerateness. Although 50 percent of the respondents decided on a positive answer to the question of whether the earnings were adequate, they felt a need to elaborate their answer by men-tioning the relation between the number of work-ing hours and the average income in Croatia, and to point out that the users’ needs, as well as the scope of the assistants’ work were variable. Therefore, they limited their assessment to their individual cases.

When it comes to communication with project leaders, it is important to emphasise that all respondents say that they had no disagreements related to project implementation – neither with the leaders, nor with other members of their associations. Evaluations of user satisfaction in relation to this particular aspect of personal assistance usually vary depending on the method and frequency of contact with the lead-ers monitoring its realisation. In that respect, users comment on the leaders’ activity differently – from praising their ability and personality, through neu-tral comments such as “they’re a little bit confused, but they have the good will”, to suspicions that the selection of users and other advantages provided by the association26 depend on the leaders’ person-al preference for individual members. However, the criticism regarding the lack of objectivity was not repeated in answering the question of how satisfied the users were with the procedure of approving per-sonal assistance users! Among answers on this par-ticular issue, the most frequent objections refer to excessive documentation that is necessary to realise the various rights of persons with disabilities, i.e. not having a single consolidated set of records for each

1

2

3

4

54,96 4,9 4,88 4,88 4,82 4,8

4,5

4,06 3,98

3,323,08

Satis

fact

ion

leve

l exp

ress

ed in

gra

des,

for

the

follo

win

g as

pect

s (le

ft to

righ

t):

Flexib

le worki

ng hours

Perso

nal ass

istan

t’s resp

onsibilit

y (PA

)

Comm

unicatio

n with

PA

PA efficie

ncy

PA ca

pacity

Planning ta

sks

Comm

unicatio

n with

project

leaders

User s

election

Educa

tion

Working hours

Record

keeping

Illustration 5: Average grades for different aspects of the personal assistance service


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case. However, individual respondents express the view that personal assistance “should not be organi-sed through the association”, elaborating this by say-ing that all the people needing such support are not informed on its availability.

The training preceding inclusion into the Project was mostly considered sufficient by users in preparing them for successful cooperation with personal as-sistants. Still, 10 percent of the respondents did not participate in the training, so the lack of data affects the final grade. Drawing on their experiences, users suggest the following additions to future training:

- Information on the users’ psychological problems, and the psychological changes that occur due to the progression of the physical illness

- Information on the specific needs of persons with different types and etiologies of disability (“specific training with respect to the user’s condition”)

- Training on basic medical care with specific exam-ples (“There was too much talk about the business aspect of the relation, and nobody explained how to climb stairs in a wheelchair, cross door-steps, what to do if the user falls, what if they choke”...)

- Topics on communication skills and interpersonal relations: approaching persons with disabilities, the ability to understand their position (“What would he expect from an assistant if he were in my shoes?”), user-assistant relationship, family problems that ari-se as a consequence of disability, self-acceptance and accepting other people’s help, etc.

Other suggestions were longer training, practical training, and creating video materials to be used as an accessible reminder of the training content.

According to the opinion of a female user from Za-greb: “the problem with the training is not the con-tent, but too harsh a tone in addressing assistants,” and her perception was that “many potential assi-stants give up after the training”. A male user from Rijeka had a similar impression, “I did not like the tone. They only talked about the users’ rights and the assistants’ duties. Nobody told the assistants what an important life experience this would be for both user and assistant!”

Among the aspects of the service that received the lowest grade was the approved number of working ho-urs. Namely, despite the satisfaction expressed over the fact that the service existed, only 36 percent of respondents said that most of their needs were now satisfied thanks to personal assistants and other avail-able help. However, it is important to emphasise that, in evaluating their need for the support of another person, the users carefully thought their answers through and explained them rationally. Illustration 6 shows the share of individual categories of answers to the question on the users’ need for additional sup-port. Given the self-assessment received, we can di-vide the sample into the following groups:

- Respondents who are satisfied with the number of the approved working hours for personal assi-stants;

- Respondents who express a desire for additional support in the duration of 1 to 2 hours per day, primarily for the purpose of social inclusion: going out, cultural events, engaging in sports or creative activities;

- Respondents who would use up to 2 additional hours of support daily, primarily on weekends, during public holidays, at night or during travel;

- Respondents with the highest need for support, whose delicate health status requires permanent support and presence of other persons. This gro-up would like additional help in the duration of 2 to 4 hours per day, primarily in order to decrea-se the burden on their families who take care of them whenever the assistant is not present.

The most dissatisfaction, as well as the greatest number of constructive suggestions to increase the service efficiency, was in response to the cur-rent form of record keeping regarding the assistants’ work. Despite understanding the need for record keeping, users state reasons why administrative work is an obligation that requires the assistance of others. So the responses were frequently:

- Assistants or family members fill out the moni-toring lists on behalf of users (“We waste precio-us time on that!”); it is impossible to create work plans a week in advance, because the users’ he-


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36%

24%

24%

16%

+ 2 to 4 hours primarily to decrease burden on the family

+ 2 hours primarily for night, weekends, travel

+ 2 hours primarily for social inclusion

Satisfied

Illustration 6: Self-assessment of the users’ need for ad-ditional help of other persons

27 E.g. the execution of the assistants’ work plan got high marks, the self-assessment of needs for additional support, and monitoring lists that were just commented on

alth can change in the course of a single hour (“First I write it down, then I have to correct it!”);

- After the initial practice period, the analysis of all the activities, and the number of minutes spent on them, is no longer necessary (“You know, I typically don’t use a stop-watch when I wash my teeth!”; “Is it really unclear to anybody that I had to be undressed before I had a bath?”; “That’s pointless hair-splitting!”);

- Assistants often work extra hours, and do more work than the records show, etc. Users also draw attention to the fact that they feel uncomforta-ble with the fact that someone has insight into their intimate needs. (“I have to write down that I went to the toilet on Thursday at 3 PM”; “Does it matter if I wash my teeth or my denture?”; “Does everyone really have to know how many times I had my incontinence pad changed?”; “It is unplea-sant for me to write about menstrual hygiene, and

I have to.”) In addition to this, respondents point out as a problem the inadequate design of the form layout (“The boxes for filling in the data are too small!”). Finally, respondents express their doubts about whether this information contri-butes to the quality of the service (“I don’t think anyone ever reads that!”).

Users therefore suggest that record-keeping lists be simplified, and that they are delivered on a monthly, rather than a weekly basis. This is clearly visible from a comment of a user who said, “This takes away our time, and it is not a reliable method of control. I think that it could be solved by a signature from the user at the end of the month, confirming that the assistant really put in all the hours... because, if that weren’t the case – the user would have no interest in signing...”

The effects of introducing personal assistance

The successful completion of the basic activities of daily living - proof of which is the users’ satisfaction with different aspects of the service27 - certainly contributes to the users’ quality of life. However, to draw conclusions about the project’s role in en-abling independent living for persons with disabili-ties we need to analyze its effects on social inclusion and empowerment for self-representation.

The average grade of the respondents’ level of satis-faction with their current inclusion into community life is 3.90, which means that they are on average mostly satisfied with that aspect. Although it seems optimistic, this data would hold more value if we could compare it with measurements from before the beginning of the project, or with the same esti-mates from persons with the most profound degree of disability who are not personal assistance users.

However, in the absence of that information, we can draw some conclusions on the actual participation of users in community life by looking at the data on the frequency of going out and on the places that users visit with their personal assistants.


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As it is clear from Illustration 7, around 85 percent of respondents go out with their assistant several times per week, while over a third leaves the house every or almost every day. However, three female users never leave their homes with an assistant – for different, but important reasons. One user’s very poor health does not allow her to leave the house (chronic kidney in-sufficiency); one user consciously disregards out-of-house activities because her priority is assistance in caring for a small child, while the third user lives alone on the third floor of a building with no elevator and two or three (paid) persons have to carry her out on the rare occasions when she leaves the house.

Illustration 8 shows the locations that users typically visit with their assistants. Although we can treat this data as an indirect indicator of the respondents’ in-terests, we should not disregard the fact that many buildings in smaller towns are inaccessible to per-sons with disabilities, and that certain activities, such as cultural events, are usually off-limits to those liv-ing in smaller and rural communities.

It is very important to note that all these activities imply the interaction of users with persons without

disabilities, and therefore represent a valid mea-sure of their social integration! This is confirmed by the fact that 44 percent of respondents met new people thanks to their personal assistant, most fre-quently through contact with their friends or fam-ily members.

In line with their preferences, most users started to engage in activities that they had wanted to do for a long time, but that were inaccessible to them:

“I never visited my father’s grave without other family members being present”; “For the first time after the accident I went to the Split theater “; “I visit literary events and take a German langua-ge course”; “I started therapy horse riding”; “I play tennis now”; “You’ll probably laugh, but I can tell you I no longer have spider webs in my room”; “My dream to visit my family in Montenegro has come true after 16 years “; “I play chess – she moves my chess pieces”; “I am now completing elementary school”; “I saw my attic room from when I was a child – it’s been years since I could get up there”; “I’m using makeup”...

Illustration 7: Frequency of users going out with personal assistants

Illustration 8: The share of time users and assistants spent in joint activities

2-3 times per week

Once per week

Never

3-4 times per week

4-5 times per week

Every day, or almost every day;

Additional training, creative workshops

Sports and recreation

Religious needs

Culture

Bank, post office

Association

Coffee bars

Socialising

Health

Shopping

Walking

Other

%

100806040200


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An extremely important piece of information is the fact that, with personal assistants at their disposal, all the respondents feel that they have more control over dif-ferent aspects of their lives. This assessment relates to physiological, medical and hygienic needs, clothes and body care, housing, going out, socialising, recreation, and other regular activities that are important to them.

Given the fact that 90 percent of users had family members taking care of them prior to the engage-ment of assistants, it is not surprising that an even bigger percentage of respondents noticed how this service had contributed to the decrease of the bur-den on the family and to better family relations. This also explains why the assistants were well accepted by the families, which respondents described as good or excellent. A user from Zadar described her family’s reaction, “They are no longer tense, burdened and nervous. They have more time for themselves. There are no silent accusations floating in the air, it’s as if my disability has somehow decreased. I have the impressi-on that there’s a greater balance between us.” A user from Virovitičko-podravska county admitted that his family were “first strongly opposed, and now they’re thrilled.” Two respondents (from Primorsko-goranska and Ličko-senjska counties) described the family at-mosphere after the assistants’ arrival: “It’s such a relief”. Other respondents also noticed that family members were less worried, and that they could have greater freedom in planing their activities, for example, one user’s father can now work full time.

Also, two thirds of the respondents noticed changes in their relations with people outside of the family, usually in positive reactions on the improvement of their overall condition upon getting a personal as-sistant (“You’re back to your old self again”... “You’re a real devil now”... “You seem to spend more time in town

now than in your own house in the village”). A higher degree of independence, activity, and the presence of persons with disabilities is being noted, and well-meaning people gladly accept this. However, some respondents mention some rather unnexpected comments from people around them, which they interpret as either jealousy on the part of their friends – because they are not their assistants; or as envy on the part of some of their acquaintances with difficul-ties – because they themselves do not have a person at their disposal. (“It’s easy for you, now that you have an adjutant, like Tito”; “Good for you, now you have someo-ne to hang out with”; “Lucky him!”).

Apart from the abovementioned control over the decision-making, there are several less obvious, but nevertheless important results in the area of the us-ers’ mental and physical health. More than 85 per-cent of the respondents notice a positive change in their mood, physical appearance and fitness level, and in how they perceive their disability. Respon-dents describe these changes:

“There is no anxiety visible on my face, or in conver-sation. I understand that disability is not a terrible thing, there’s no need to hide”; “I feel more fulfilled now, I got my dignity back”; “I am calmer, more mobile, I accept advice differently”; “I feel I’m more independent and mature, I rely on my parents less than before”; “I am more independent, my mo-rale is up”; “I accept myself and I’m not depressed anymore”; “My willpower is stronger”; “I am more confident and more stable”; “My spirits are up, my life has got new meaning, and it’s beautiful”; “I feel I’m worth more, because I can make a promise”; “Illness brings loneliness. I feel safer because I know someone will come. Until now, all I had was TV”; “I

Illustration 9.: Users’ proposals for improving personal assistance

SELECTION, TRAINING AND MOTIVATION OF PERSONAL

ASSISTANTS

EFFICIENCY OF PERSONAL ASSISTANCE

ACCESSIBILITY OF PUBLIC BUILDINGS AND HOUSING

SOCIAL ACCEPTANCE AND SENSITIVITY FOR PERSONS WITH DISABILITIES


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28 The temporary service contracts were signed for the period of six months due to the need for the adjustment and evaluation of mutual satisfaction regarding the provision and use of the service.29 MOFVIS points out that associations were obliged to secure a replacement for an assistant with a legal right to use annual leave or sick leave, which was foreseen in the financial terms during the application phase of the project.30 46% of informants knew their assistants before, while 48% of informants found their assistants through the mediation of their associa-tions. The lowest number of informants found their assistant through private advertisements or by directly contacting the Employment Bureau.

feel satisfied and free, not a burden to others”; “My life has more order – and people can see that on me”; “I’m more cheerful, and I work on myself more than I used to”; “Some days are bright, some are dark, some are gray – in other words, I’m living a more or less normal life”; “I don’t get foolish ideas... I have someone to confide in... I’ve made progress in everything”; “I’m not afraid of people anymore”; “Now I can focus on my love life”; “I don’t depend on others, I’m in control of my life”; “I understand that, despite problems, I can lead a better and a more dynamic life”…

Towards a more efficient personal assistance – users’ proposals

Instead of a conclusion, it is useful to look at the most frequent complaints and suggestions made by users with the purpose of improving the person-al assistance service, and to determine the desirable profile of personal assistant. Through a systematic analysis of the respondents’s proposals, we reached the action guidelines presented in Illustration 9.

The first major group of suggestions pertains to making personal assistant a profession with the aim of better selection, training, and the improvement of their working conditions. Users point out that as-sistants, who signed temporary service contracts28, cannot contribute towards neither their health in-surance nor their pension. Employed assistants work 4-hour days, hence they have lower earnings and it is not uncomon for them to have additional jobs, which the users adapt to so as not to lose them. Furthermore, having flexible hours means working on weekends and holidays. Assistants who want free time on those days find their replacements

themselves and pay them out of their own pocket. The more permissive users don’t insist on their as-sistants working during the weekends, but in doing so they add more work to their families or decrease the quality of their own activities. An immobile user from Karlovačka county wanted to help her assis-tant who wanted to spend Sundays with her family. They reached a compromise so that on Sundays the assistant worked only in the evening, but the user admits that, for her, this meant spending the entire day in bed waiting for her assistant.

Lack of organised replacements also becomes a problem when the assistant needs sick leave or an-nual leave.29

Those living in more isolated areas are faced with the problem of assistants living far from their place of residence, which is why they can not adjust the working hours to their own needs, so the assistants sometimes do their work at one sitting. Due to the distances involved, transport costs to urban centres are higher, which decreases the social inclusion op-portunities for such users. Even if they can have their travel costs reimbursed, going out takes up a greater part of the assistant’s working hours. Given the defi-cit of assistants in the labour market30, many infor-mants expressed the fear of their current assistant leaving them when they find a better paid, more secure job.

Many users believe that the existence of an organ-ised system of psychological assistance and super-vision would make the assistants’ work significantly easier. The respondents suggested the forming of an expert team to supervise and advise personal as-sistants in the regular context of their collaboration with users, i.e. in the field, instead of by telephone. This would supplement the existing support that associations were already providing within the pilot project.


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The second and third group of suggestions refer to problems that are closely linked to a lack of social sensitivity for persons with disabilities. Users still fre-quently encounter architectural barriers, improperly parked cars, administrative difficulties in health care, and difficulties in using their right to special trans-port services, aid devices and rehabilitation, but also social distancing.

“Ask other people if they notice persons with disa-bilities?!”; “Nobody needs us, neither god, nor devil”; “People are skeptical about the abilities of persons wth disabilities”; “Nobody encourages us to get an education and work!”

Many respondents mentioned the need to better inform persons with disabilities about their rights, opportunities and available services. In this respect, they emphasised that “not everyone knows about personal assistants”, and that “it should become a law for everyone who needs an assistant, and that means everyone who wants to live out of bed”. Also, some re-spondents are displeased because of “a lack of ba-lance in the rights of war-disabled persons and other persons with disabilities”; (“Everything is spent on the soldier!”); not recognising caregiver status to mothers who had earned their pensions (“Mothers who didn’t work are being rewarded”); and because family mem-bers cannot be assistants. Given the fact that a family member can be recognised as having the function of personal assistant31 in certain exceptional circum-stances, some respondents believe that the criteria for deciding on this are not precise and are subject to different interpretations. Without questioning the justification of the principles of the philosophy of in-dependent living, we bring the impressions of two respondents who had different experiences with re-gard to the interpretation of this rule.

A user from a town in Istarska county was allowed to have his unemployed wife work as his assistant. The user was very satisfied, and he described his experience: “We both went through a positive tran-sformation. The children took it seriously that their mum couldn’t do several jobs at the same time. They are more responsible and more independent. We soci-alise and go out a lot more. No more depression... This

is a new beginning for us. I’m living a whole new life with the same person. People who know us say that we seem younger, and ask what’s happening to us!?...” We came across a contrastive example in a town in Sisačko-moslavačka county. The user lives with his unemployed wife and a small child. The wife was not allowed to work as his assistant, and will soon take a job in the city of Zagreb. The child will then have to spend additional time in day-care, whereas, when the assistant’s work is done for the day, the user will remain completely helpeless in a rented apartment that has wood heating. The user’s com-ment was: “What kind of life can we hope for, when we are deleted from all the lists? My child won’t see either of us!”

Based on the respondents’ evaluations of the char-acteristics and capacities they consider the most im-portant for a personal assistant, we created a profile of the characteristics of desirable candidates for this vocation (Illustration 10). We took into consideration the characteristics respondents mentioned 5 or more times. It is interesting to note that none of the charac-teristics neither exclude nor assume family ties.

Finally, we wish to extend the respondents’ grati-tude to all those who recognised their needs and provided them with the support of personal assis-tants. The respondents expressed concern for the continuation of the project, and for their future without this service.

“The idea that they might cancel the service makes me panic”; “Without them, we’d be demoralised and depressed, we would fall into doubts that are a danger to our health”; “Solitude, monotony and closed spaces are killing us. This is why the perso-nal assistant is a genuine cure for our troubles, and a dream come true for every person with muscular dystrophy.”

Perhaps then it is appropriate to end this report with a quote from a user who wanted to make the following appeal: “By providing services like personal assistance and organised assistance for the elderly, you are keeping us from a sad, mock existence in some in-stitution!”

31 There are four such cases in this sample!


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Illustration 10: Desirable characteristics of personal assistants according to users’ opinions

Personal assistant

Communication

skills

Empathy

Patience

Flexibility

Sincerity, integrity,

discretion

Obedience,

reliability

Physical strength

Similar age and

interests

Responsibility

Basic knowledge

of medical care

and psychology

Altruism

The project from the perspective of personal assistants

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32 In 2007, there were 45 men and 130 women working as personal assistants.

5. The project from the perspective of personal assistants

As part of the evaluation we also surveyed 50 assis-tants engaged during the reference year of 2007. In addition to determining the basic sociodemographic characteristics of the employees, the goal of this evaluation task was to examine their satisfaction with different aspects of their work, the sources of motiva-tion and the obstacles in their work. For that purpose a questionnaire was created, the tested and modified version of which is in the appendix of this report.

Given the fact that the planned written form of the survey was not possible because not enough potential respondents had personal e-mail access, the uniformity of procedure was achieved by an approach analogous to that applied to the users. Namely, structured telephone interviews with per-sonal assistants were conducted using a question-naire. Apart from achieving methodological correct-ness, this approach was used because it enabled the data privacy protection which was assumed to be important to the interviewees.

Interviews were conducted in the period between September 8 and 22, 2008. Participation in the sur-vey was voluntary and anonymous and announced in advance, with the timing adapted so as not to in-terfere with the assistants’ work obligations.

Sample characteristics

In designing the sample, the selection of specific respondents was random, but due attention was paid to ensure that respondents from all 17 coun-ties were represented, and that we had an adequate quantitative ratio of male and female respondents.32 As shown in Illustration 11, the survey covered 37

Women

Men

Illustration 11.: Sample structure according to gender

Illustration 12.: Personal assistants’ education level

10

31

9

Primary school Secondary school

Students0

10

20

30

40

female assistants (or 74 percent) and 13 male as-sistants (or 26 percent). The employees’ education levels and prior work experience in providing care and assistance are shown in Illustrations 12 and 13.


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33 Results of the survey on these groups in Croatia was published by UNDP Croatia (2006), in the publication: “Unplugged: Faces of Social Exclusion in Croatia”, Report on social development

Illustration 13.: Personal assistants’ prior work experience with similar tasks

No experience

Paid work

Volunteer work

UnemploymentTotal

Up to 2 yrs 2-5 yrs 5-10 yrs more than 10 yrs

Never worked

Year of birth:

1990-1980

Number of persons surveyed 7 2 0 0 5 14

% in the sample 14% 4% 0% 0% 10% 28%

1979-1969 Number of persons surveyed 1 1 3 3 2 10

% in the sample 2% 2% 6% 6% 4% 20%


% in the sample 12% 8% 8% 10% 6% 44%


2% 2% 0% 2% 2% 8%

Total Number of persons surveyed 15 8 7 9 11 50

% in the sample 30% 16% 14% 18% 22% 100%

Table IV.: Overview of the length of unemployment of respondents prior to obtaining employment as personal assistants

The information value of this data increases when we link them with data on the interviewees’ age and duration of unemployment prior to becoming em-ployed as personal assistants. Without ignoring the fact that the selection of variables and the sample size put significant limitations on making reliable, generalised conclusions, it is important to say that this survey points to noteworthy tendencies in the employment of groups that are, just like persons with disabilities, at a high risk for social exclusion. Namely, the data in Table IV and the respondents’ spontaneous comments speak of the project’s im-pact on the employment of members of social groups at a distance from the labour market: per-sons in higher age brackets (especially women over the age of 40), young people without work experi-ence, the long term unemployed, and persons who have difficulty finding employment (persons with lower education levels or with non-competitive qualifications), single parents, members of national minorities, and returnees and displaced persons.33

Given the fact that over 50 percent of the respon-dents had been unemployed for over 5 years prior to their current employment, their satisfaction with achieving the right to work is understandable (“I was overjoyed when I found out about this opportu-nity”; “I’m so happy that someone gave me a chance”;


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“Having a job gave me new life”...). Apart from two exceptional cases, all respondents said that they would recommend the job of personal assistant to someone they were close to. The respondents’ explanations of these attitudes reveal that the hu-mane nature of this job significantly contributes to their satisfaction, and it is also the most frequent ar-gument in the positive responses.

“I was out of a job after working for 20 years, and I was looking for any kind of job. Now the humane-ness of this job is so fulfilling that I feel something important would be missing from my life if I sto-pped doing this”; “If you’re not well educated or you fall into unemployment, you can bring back to life both yourself and the person you’re assisting”; “At first, I used to come home crying because I didn’t know how to approach a person with difficulties. Now, that I’ve got the hang of it, I can honestly say that this is the best work experience of my life”; “I re-commended it to my daughter, because this is the kind of job that enriches you”; “In my experience, I can say that this is nice work. Socialising with such persons can enrich a person emotionally. It means a lot to me that somebody needs me, and that gi-ves me a feeling of satisfaction”; “If your work can make one person happy – that’s more than eno-ugh!”; “When I see the expression on his face – I’m glad I came!”; “You help, and you feel a kind of sa-tisfaction that money can’t buy.”

Some of the advantages of the job of personal as-sistant according to the respondents include the inherent challenge and job dynamics, but also the working conditions.

“Getting to know the world of a person with a di-sability is a great experience!”; “Not everyone could do this kind of work, but you can learn a lot and be useful both to yourself, and to others”; “Working with people is very interesting, you’re constantly on the move and each day is different”; “... great for pe-ople who don’t like office jobs”; “...pretty good ear-nings for a young person”; “...you’re employed, and contributing towards your pension...”; “...the wor-king hours are OK, and so is the pay...” Assistants who said that they would not recommend their

job to other people explain their point of view by the fact that the job is quite demanding. (“I would not recommend this to someone unless they really had to do it. It is a very demanding job, both physi-cally and mentally”; “If it weren’t for the fact that I knew this person from before, I would not have accepted the job. For me it’s easier to do manual work, than this.”)

Job satisfaction and obstacles in the personal assistants’ work

The average grade of satisfaction of the respon-dents with different aspects of personal assistance is 4.26, which means that they are mostly satisfied with the analyzed characteristics of their work. Il-lustration 14 shows that assistants are most satis-fied with their communication with the users, the achieved results, and the level of acceptance on the part of the users’ families, while satisfaction with the record-keeping, earnings, working hours, and train-ing receives grades below the average.

Given the fact that users usually let assistants do the record-keeping, it is not surprising that one comes across criticisms regarding the existing method of record-keeping. Although respondents understand

Illustration 14.: Personal assistants’ satisfaction with different aspects of their work

0

1

2

3

4

54,96 4,8 4,72 4,68

4,42 4,363,94 3,76 3,68

3,3

Communicatio

n with

personal

assist

ance

users

Results

Acceptan

ce by t

he user’s

fam

ily

Comm

unicatio

n with

project

leaders

Job desc

riptio

n

Flexib

le worki

ng hours

Training

Hours of w

ork

Earnings

Record

-keeping on perfo

rmed w

ork


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the need for their collaboration with users to be moni-tored, they criticise the pedantic nature of this pro-cess. Apart from requiring a lot of time, issues being criticised include the inability to plan precisely because of the changing nature of the users’ needs, as well as the fact that the activities with the users are “...more or less repetitive”. Another complaint refers to the existing forms which do not contain adequate space to indi-cate several visits in a single day or night-time duty.

When it comes to earnings and working hours, the most frequent comment from the respondents is that “...it could be better”. Many respondents wish to be engaged full time, justifying that with higher salary but also with the users’ need to receive additional as-sistance. Namely, 60 percent of respondents estimate that, despite their engagement and other available forms of support, a great part of the users’ needs is still not being satisfied. These respondents believe that “their” user absolutely needs additional support from another person in the duration of 1 to 4 hours per day in order to achieve independent living in the community. They are unified in the view that the pos-sible introduction of additional hours would primar-ily reflect upon the socialisation and users’ quality of life, because they could use this time for going out and socialising, excursions, recreational and creative activities, renovation of their living space, and similar activities. Some respondents argue that such an ap-proach could be used to resolve the problem of the evenings and weekends, when families typically take care of the users or they are left to themselves (“...he wouldn’t go to bed at 10, which is when I have to leave”; “...as if they don’t need to live on weekends”).

While many respondents evaluate the training as completely satisfactory, and believe that “...you can’t learn more in lectures anyway...” and that “...the user trains you face-to-face” on everything else, some respondents express harsher criticism, such as: “For me, a 5-hour meeting where we quarrel for 3 hours is no training”, or, “We got everything in the training, except what we need!” Further conversation revealed that the first statement is a comment on the train-ing organised in Primorsko-goranska county, which was specific due to two oversights. The organisers of the training in question had informed and invit-ed a wide circle of persons with disabilities, many of whom did not satisfy the user selection criteria

foreseen in the Project. So it happened that, in the words of the respondents, “parents with children with difficulties came, as well as frail old people from throughout the county and from the neighboring area of Lika... people were very disappointed... there was a lady who asked a girl in a wheelchair what she was doing here if she’s paraplegic?!...” In addition to that, two of the three announced lecturers did not arrive due to illness, “... so one person had to cover both their, and the other two segments of the lecture.” The second objection was followed by opinions that training should:

- LAST LONGER, AND CONTAIN MORE PRACTICAL EXAMPLES (“... how do I put on his jacket or sho-es, if he’s stiff?”, “Nobody showed us how to chan-ge the linen while an immobile person is lying on the bed – I learned that from nurses in Lovran!”; “Each person with a disability is different, and not all of them should be lifted the same way. You have to know how to do it!”; “All the talk abo-ut ethical issues boils down to good manners, actually. Every normal person will know how to behave in another person’s house, but they won’t know what to do if the user scalds themself by accident”; “ In the lectures, everything seemed somehow scarier than in practice, I kind of got scared”...)

- INCLUDE PERSONS WITH DIFFERENT TYPES AND ETIOLOGIES OF DISABILITY (“...to present their needs”), AS WELL AS EXPERIENCED PERSONAL ASSISTANTS (“...to transfer their knowledge and te-chniques to new assistants”)

Although a certain number of respondents believe that additional knowledge and skills aren’t needed in their case for successfully continuing with their work of personal assistants (“Loving your job is the most impor-tant part, you don’t need a lot of expertise for that”; “I have a lot of experience and I know everything!”), most think that additional training might advance the quality of the service provided to users (“You need experts for spe-cial services, but I’d give more than I’m asked for if someone would show me”). In that respect, the respondents sug-gest that the training be supplemented by topics from the areas of:

- MEDICAL CARE, FIRST AID, PHYSIOTHERAPY, AND MASSAGE (“I’m afraid of hitting the intestine when


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I change her stoma bag”, “...we should learn from a physiotherapist, and then do exercises”...)

- PSYCHOLOGY (approaching the user and family, understanding the needs and problems of per-sons with disabilities and their families, commu-nication skills, users self-acceptance and moti-vation, individual assessment of the candidates’ suitability for the profession...)

- THE LABOUR RIGHTS OF PERSONAL ASSISTANTS (“User rights are exaggerated, and what about our human and labour rights?”; “I think the training is to blame for users thinking that they, as bosses, can do what they please. They shouldn’t have anything to do with our salary or our other rights like days off and annual leave”)

Two assistants complained about the training be-ing delayed in relation to their starting to work (“We were thrown into the fire at the very start”; “My sister works in a gynecologist’s office, so I had to ask her all kinds of questions in the beginning”), and two never completed the training.

The majority of respondents are mostly or completely satisfied with their communication with the project leaders. While some consider them to be the main source of support in their work, for some they are the main source of frustration. There were also two cases of explicit dissatisfaction with the project leader. In one case, the leader was accused of financial manipu-lations and blackmail of employees (“The ministry paid the driver, but the man never got his costs covered... She keeps reminding us that she’s the one who hired us and that because of that we should clean her rental apar-tments ... People complain, but she has her little toadi-es...”). Another assistant is displeased because “...there are favoured users and assistants, while others get unfri-endly glances, and are critised for their inactivity in the association... The entire association seems problematic to me.”

Although respondents believe that communica-tion with users and the level of acceptance in fami-lies are mostly or completely satisfactory, around 10 percent of respondents mention that they had disagreements with the users’ families. According to those assistants, these disagreements were caused by complex circumstances in the users’ family which make the assistants’ work difficult.

“The sister takes the liberty of sending me to the garden to pick cherries...”; “Her husband sends me to go clean the courtyard, or their smokehouse..:”; “His wife is undergoing psychiatric treatment, I frequently take care of the child, arrange en-rolment in day-care..:”; “The husband got sick, now he’s immobile as well, I’m there for both of them..”; “Her husband and son work in the city of Rijeka, I don’t keep close track of the time, sometimes I’m there for the entire day...”

In some of these situations, the user or the associa-tion intervened in order to clarify the role and con-tent of the personal assistant’s work (“She told them that it was between us, and that the user knows why I’m there. The personal assistant is not there to take care of the fields and vineyards, but to take care of the per-son..:”; “The leader explained to him that I was not there for him [the family member]..:”). However, it is clear that some of these resolutions of disputes were merely temporary “truces”, i.e. that the dysfunctional nature of some families forces the assistants to make concessions and compromises if they want to keep their job.

“Afterwards, they were angry with me and I couldn’t work in those conditions. I told them – it’s either the old way, or we won’t do it at all...”; “I sim-ply can’t wash his plate and leave hers...”; “There’s nobody to help them but me...”; “Well OK, it doesn’t happen every day”...

When it comes to other circumstances complicat-ing the personal assistants’ work, respondents most frequently mention: housing and public facilities that are not adjusted to the needs of persons with disabilities, lack of aid devices, unavailability of a special transport service, but also carelessness, or rather a general lack of understanding from oth-ers. Along with the suggestions already mentioned concerning the increase of working hours, assis-tants express the need for additional support and monitoring of their work in terms of organising, for example, counselling, additional training and joint activities of assistants and users. They also express the need for better informing about their labour ob-ligations and rights, namely about the conditions for their becoming employees, instead of working on


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the basis of temporary service contracts; about how they can become assistants to a second user; find paid replacement during annual or sick leave; de-cline inappropriate work assignments; ask for travel expense reimbursement.

Regardless of these difficulties, the respondents grade the work stress level with an average grade of 2.56, which means that they consider personal assistance work either not stressful, or only occa-sionally stressful. Illustration 15 shows the desirable profile of candidates for the job of personal assis-tant, formed on the basis of the respondents’ most frequent answers regarding the predispositions that they consider most important for their vocation.

It is important to note a significant level of agree-ment between users and assistants regarding this matter. Still, assistants with experience point out the importance of three characteristics that are, under-standably, not dominant from the user’s perspec-tive: not displaying excessive emotion or feelings of pity for the person with a disability, professional dis-tance, and not being uncomfortable with providing care and maintaining the personal hygiene of an-other person. Since these characteristics imply full consideration of personal integrity, assistants rightly consider them a necessary precondition for provid-ing support to the user. Moreover, treating the user as an equal, with limitations – but also opportuni-

Illustration 15.: The personal assistants’ opinion on predispositions desirable for their vocation

PERSONAL ASSISTENT

Altruism

Not displaying

excessive emotion

or feelings of pity

Distance

Responsibility

and diligence

Optimism

Communication

skills

Patience and calm

Flexibility

Physical strength,

absence of

squeamishness

Basic knowledge

of medical care

and psychology

Empathy


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ties, is something that many assistants emphasise as an important factor motivating the progress of persons with disabilities.

“I accept him as he is, and his disability is not at the forefront. My hands replace his, but he doesn’t need my head when he has his own”; “Her fami-ly was overprotective in everything. That’s why she was depressed, and now she lives a full life!”; “I don’t understand why they talk about them in third person when they exist?”; “Pardon my langu-age, but a disabled person doesn’t need a crybaby, they can sense that...”; “He’s a human being, just like anybody else. He doesn’t need someone to cry over him, but to assist him in what he can’t do on his own”; “I didn’t feel sorry for him. He accepted himself just like before the injury, he’s more inde-pendent...”

The effects of the cooperation between personal assistants and users

In addition to the assistants’ comments quoted ear-lier, with regard to the effect that having a humane vocation has on their feeling satisisfied with them-selves and with their job, it is important to mention that satisfaction also depends on stimulating work results, newly acquired skills and other people’s positive reactions. Personal assistants’ satisfaction with the results of their cooperation with users rep-resents a significant acknowledgment, as well as a powerful impetus for their work. It is interesting to note that the intrinsic motivation of both users and assistants is strengthened by relatively small contri-butions of the other side.

“I cut his nails, and he’s totally happy”; “I’m prou-dest when we go out into town and she doesn’t need her white cane, because she totally trusts me”; “I’m happy when everything works for her”; “Although physically she is withering rapidly, when I come to her she perks up. There’s nothing I wouldn’t do to make her feel better”; “I’m happy that her life is more orderly, and that she doesn’t smoke as much”...

Apart from taking care of another person, assistants say that by cooperating with the user they have improved on other skills (e.g. cooking), or learned new ones.

...”I got my driver’s license”; “In workshops we paint silk and glass, make beaded jewellery...”; “...I’m more communicative”; “...we make candles and greeting cards”; “ With her I got used to reading more and going to art exhibitions, I didn’t have time to do that before”; “For the first time in my life, I went to the Roman amphitheater in Pula for the film festi-val. Film is my new hobby”; “I learned a lot on fami-ly and parenthood from the user”

Still, it is the change in their perception of persons with disabilities, and the change in their own world views as well, that respondents perceive as the most important aspects of the personal assistance experi-ence. Respondents point out that, while getting to know the user’s personality and their way of over-coming complex health and life difficulties, they lent strength and support not only to the users, but also to themselves.

“He has a lovely character and he accepts life wi-thout anger. I became calmer as well... He can’t even eat on his own, and yet he smiles at me. What excuse do I have, then, to be in a bad mood?”; “Un-til you see what kind of suffering there is, you’re always dissatisfied. Now I think differently. I have no reason to be unhappy”; “I learned to really cherish life and my health”; “I was amazed by the fighting spirit and life optimism that healthy peo-ple don’t have”; “I’ve never met someone so strong and persistent, with such will power... She actually supports me and lifts my spirits... Of all the people I know, she complains the least. I’ve grown stron-ger with her.”; “spending time with them starts an avalanche of things you didn’t even know existed... They are spiritually healthy and they’ve mana-ged to pass their optimistic view of life on to me. Everything seems much nicer and easier than be-fore”; “...I am calmer and more attentive”; “He’s full of positive energy and it rubs off on me”; “I notice persons with disabilities more than before, and I help everyone”; “I’ve realised that illness is a part of our lives, and that is something we must accept as


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Illustration 16.: Social effects of the personal assistance project

Support for persons with disabilities

Change of social attitudes

Employment of personal assistants

Social inclusion of vulnerable groups

completely normal”; “I’m more attentive, adapta-ble, considerate, sensitive to others..:”; “Although he is dependent and disabled, his patience and tole-rance have put me to shame”; “They fight with all they have to make their day as nice as it can be”; “I feel closer to these people, I notice how the city fails to adapt to their needs”; “I can see more clearly the warmth radiating from these people. I’ve gained a friend, and I can see that you can balance your life so you don’t feel depressed, but happy”

Without disregarding the essence of personal as-sistance, which is the support of the independent living of persons with disabilities, it is important to note the valuable secondary effects of the inter-action between users and assistants. Considering the interviewees’ responses that the strongest sup-port in their work was provided by the user’s family members, as well as their own families and friends, we are made aware of the contributions of a wide circle of people “touched” by the project. (“The user is quite heavy; I worry that he might fall during the bath. When I’m transferring him into the bathtub and out,

my husband helps me”; “When I go for a trip with my family, we take her along, she became part of our fa-mily”; “My friends help out if we need a lift somewhere”; “When I go out with my friends, it’s perfectly normal for her to come along...”)

Therefore, if we interpret the implementation so far of the personal assistance project as a sort of action-based research, we notice a spiral connection of its social effects, shown in Illustration 16.

In that respect, the long tradition of empirical re-search regarding prejudice and social distance can be built upon with the experience of the coopera-tion between users and assistants which has con-tributed to solving important social issues, but also to a better climate for further support for persons with disabilities. We therefore conclude this chap-ter with a quote from an assistant, which illustrates that stated above with the following words: “First they would look at me and say that the dear Lord sees everything, but when they too saw a person instead of a wheelchair – I knew that I had done the right thing.”

Project leaders in the associations: the management

perspective

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6. Project leaders in the associations: the management perspective

Phone calls and personal conversations were con-ducted with project leaders in order to further vali-date the reports on project implementation in asso-ciations, and to put the project in context and better understand the the implementation course. In total, 14 project leaders were interviewed within associa-tions, among them four persons using personal as-sistance within the project.

Project leaders in associations represented a link between personal assistants and users, and MOF-VIS and CUAPD. Their experience included admin-istrative affairs (contracting, payments, reporting), supervision of the work of personal assistants, of-ten direct assistance in preparing plans and work reports, and sometimes help in resolving potential conflict situations between users and personal assis-tants. As a female interviewed leader noticed, “If you have eight users, eight personal assistants and two pe-ople providing technical service, that’s just like having a small business!”

That is why we thought it was important to describe their perspective in a separate chapter of the report with the aim of evaluating the pilot project, but also to gain experience important for organising personal assistance in the future. Here we outline a summary of some of the key achievements and difficulties in implementation, assessments of the quality of the training and communication with re-sponsible entities in the project (CUAPD and MOF-VIS), and an assessment of the associations’ capacity to provide personal assistance in the future. In the end, we bring summarised proposals connected to introducing personal assistance among the rights of persons with disabilities.

When it comes to key project achievements, the im-mediate effects of personal assistance on members of the associations included in the project are the most prominent. The most frequent examples are

those of increased mobility, greater independence, and decreasing the burden on the family.

“They’re very happy to be able to go out”; “ more cheerful”; “They leave the house more and more, they go to pilgrimages, to visit family and friends”; “The most important thing was to get them out of the house”; “A 22 year-old was left with her old grandmother after her mother’s death, and now she went out with an assistant for the first time”; “She lives alone now, she used to live with her nep-hew”; “People have become more responsible, they need to know what they want to do with themsel-ves, they learn to plan”; “Those who used to care for these people are now better off, with less burden, because it’s not only that a person with a disability can’t take care of themselves, they can’t help others either”

Exposure to a new experience that leads to change at a personal level in terms of increased trust to-wards others and greater readiness to communicate is also something that leaders consider an achieve-ment. Some persons with disabilities declined to be involved in the project at first, because they believed that they would not feel safe with an un-known person as personal assistant. However, when it comes to those that did become involved in the project, leaders notice that the initial distrust was completely transformed as time went by: “She told me she couldn’t wait for me to come so she’d have so-meone to talk to.”

Several leaders mentioned that they had attempted to secure assistance for their users in the past as well. However, with the exception of a shorter time period when personal assistance services were pro-vided by civil service conscripts, these were mostly sporadic activities and depended on the availability of volunteers, or funds that the associations would get through private donations. This is why some see the very ability to finance personal assistance for a longer period of time as a noteworthy achieve-ment in itself. For some associations it was “the most important project, which definitely brought change,” personal assistance was “crucial for increasing the visi-bility of persons with disabilities, and this project brou-ght down the barriers in people’s heads, or diminished them at the very least.”

Project leaders in the associations: the management perspective

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When it comes to difficulties in implementation, the leaders most frequently mention financing issues (which includes insufficient working hours), the level of users’ understanding of the obligations and rights of personal assistants, motivating potential assistants, and overall association capacities.

When it comes to financing, respondents frequently mention travel costs not being covered, i.e. that “co-sts are approved to some, and not to others,” or insuf-ficient working hours, “the number of hours should be greater, because that’s important for everyone; all the pensions are very low, so few people could cover the costs on their own; 8 hours at least, it would make a difference for both users and assistants.” Some leaders believe that direct financial assistance is necessary in some cases (“some people do not want an assistant, but 2000 HRK”), or the possibility for a family mem-ber to earn money through providing assistance (“everyone, both the father and mother, are unem-ployed, neither can be her assistant, and they care for her 24 hours a day!”).

Sometimes users had no previous experience with time management, and that decreases the service effect (“if the user can’t plan well, it’s a waste of mo-ney”). Leaders therefore think that it would be im-portant for the training to cover time-management skills, or that additional support be provided at the start of using the service. Also, leaders faced prob-lems resulting from differences in understanding the scope of work that personal assistants can do, or in understanding the appropriate way of communi-cating: “I told them, I can do what is approved, I can’t maintain their garden;”or, “the user is the employer, but he can’t use the assistant as a punching bag.” There are also problems when it comes to understanding how the personal assistants’ rights are guaranteed depending on the contract type, and associations sometimes have no staff who are familiar with this issue.

When it comes to motivating potential personal assistants, leaders mention that in some individual cases they had been trying to find assistants via the employment bureau or newspaper advertise-ments for a long period of time. Some leaders were surprised with the time it took, since they believe that “it’s good money for four hours of work.” On the

other hand, according to some respondents, it is the working hours and the wages that are an obstacle in finding and keeping personal assistants for a lon-ger period of time (“It’s a lot of work, and the wages are low”). There were difficulties in finding assistants for the specific needs of particular users (e.g. a male as assistant for a user who is “a strong man, so he needs at least two persons for transfer”). It was espe-cially difficult to find personal assistants in smaller communities. Proposals on how to attract potential personal assistants include stronger media promo-tion, as well as additional information for the unem-ployed through employment bureaus. In addition, they believe that younger retired persons could also be engaged as assistants, provided that they are in good mental and physical health.

Training should be somewhat longer for both users and assistants, according to the opinion of associa-tion leaders. It should be adjusted to their needs, such as prior education or specific aspects of ill-ness (e.g. concentration problems caused by illness make it more difficult for some persons to listen to 4 to 5 hours of continuous training). It would also be important to organise training in users’ places of residence or at least in county centres, because the journey to Zagreb is an additional burden for a num-ber of users. In some counties, the training was not held at an appropriate time - in some cases it was held a full year after the beginning of the project, so one leader said, “When we finally got to the training, we didn’t learn anything new.” Two complaints were made on the credibility of the lectures on indepen-dent living, since they were given by persons with-out disabilities. The training should be organised in regular time intervals, frequently enough for new users and personal assistants to be trained from the very start. Apart from users, personal assistants and leaders, family members should also participate in the training whenever possible. Some of the users notice that family members who are acquainted with the principles of independent living and per-sonal assistance accept personal assistants with less resistance, even with greater support. When it comes to the training content, they believe it is im-portant to train users on how to express their own needs.

Project leaders in the associations: the management

perspective

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Communication with CUAPD and MOFVIS is some-thing that most leaders find satisfactory (“Whenever we called Mrs. Mirić or the Ministry, everything went fine”). Several diverging opinions should be men-tioned with the aim of improving future commu-nication. Some leaders said that CUAPD frequently responded to certain e-mails with a substantial delay (even an entire month), and that they were not always available for phone consultations, so in such cases the leaders called MOFVIS. There were also cases of contradictory information with regard to estimating the needs of potential users: e.g. the B.I. value for all other assessments was submitted by physiatrists, while CUAPD suggested that they should fill in that data themselves.

In interviews, leaders frequently mentioned that the associations’ capacities were insufficient for long-term administration of the personal assistance project, at least with the current level of financing. Within this evaluation it was impossible to deter-mine precisely which associations could administer the service in the long term. The fact is that associa-tions applied voluntarily to the competition process within the pilot project with the desire to provide their members with the needed support. However, it is possible that it was somewhat easier for associa-tions with professional staff to follow the competi-tion procedure. Individual leaders pointed out that there are associations in certain towns or counties that did not apply although they have members who are potential users, because those associations decided that “it is not useful for the association, and it is a lot of work.” Alongside the comments from some respondents who mention insufficient capacities and the focus on other activities involving the par-ticipation of a wide circle of persons with disabilities, such as informing them on existing rights, or sports and cultural events, it is also important to note a com-ment saying that “each person who needs a personal assistant should have one, rather than it being organised through the associations.” However, there were also ex-amples of associations showing greater capacity than expected, e.g. one association, learning from their pilot project experience, independently succeeded in mobilising funds from the local community for a personal assistance user.

Leaders frequently support potential users to apply, and, at least in some associations, they influenced the final selection of users that the associations ap-plied to receive funds. In this way, they were trying to come up with additional selection criteria at the level of associations. For example, they took into con-sideration the availability of family members, age, or activity in the association. For instance, in a situation where they had to decide between two young men in tetraplegic condition, they chose the man whose parents work at a distant location, as opposed to the other young man whose parents worked near their home. When it comes to age, it seems that young persons were sometimes selected as users – “young people are more active, it’s more important for them to have an assistant”. Occasionally they expressed doubts on the appropriateness of the selection in some associations, “we insisted that we select persons with reduced mobility, but that wasn’t the case with all associations.”

Proposals on the introduction of personal assistance

Project leaders in associations do not have an en-tirely clear concept of the implementation mecha-nisms. Most of them believe that associations should not be the responsible entities for personal assistance, certainly not the key entities, and they differ with regard to whether deciding on the right to personal assistance should be under the author-ity of centres for social welfare, family centres, or an entirely new body.

“In the future, associations could keep their inter-mediary role between those who provide the funds and users and personal assistants, but they should have more employees. We only have a secretary employed, who also leads the project.” “The asso-ciations shouldn’t be the ones to handle that, it would make more sense to have a single centre in charge.” “It would be good for this to continue, but through some state institution.”

Project leaders in the associations: the management perspective

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Only a smaller portion of the associations are inter-ested in continuing with the administration of the project, namely, in providing personal assistance. These are associations that had employed staff from before the project which could take on the obliga-tions of reporting to MOFVIS and supervising the work of personal assistants and user satisfaction. In introducing personal assistance, the option should be given of signing contracts directly between users and service providers, without the mediation of an association. At the same time, associations that have the required capacities at their disposal should be allowed to continue performing administrative and financial affairs needed to provide quality personal assistance. Arguments that support associations as relevant entities for personal assistance are based on the assumption that associations know the situ-ation in the field, that they have direct communica-tion with potential users, and experience gathered from this, as well as from earlier projects.

The sustainability of the service, even if the service should become part of the system, is one of the problems particularly emphasised by project lead-ers and others. Introducing the service into the catalogue of rights of persons with disabilities is an essential step towards sustainability, but even then there remain misgivings concerning the feasibil-ity of the rights that depends on the availability of funds, the scope of covered users, working hours, and other conditions.

There is agreement, however, on the desirable char-acteristics when it comes to organising the service:

- The service for persons with the most profound de-gree of disability should be financed primarily from the state budget. Respondents consider this form of financing more secure than relying on county or city budgets. “If this is done locally, it won’t work.”

- It is important to ensure continuous monitoring and evaluation of the service, including regular field visits, “CUAPD or MOFVIS should contact the users occasionally, so that they feel that they are important to those who start projects, or those who finance them.”

- Staff in charge of personal assistance should by all means include persons well informed about the issues connected to persons with disabilities, and this staff should include people with perso-nal assistance experience (both as users and per-sonal assistants).

- The quality of the training should be improved with regard to the following criteria: timeliness; adaptedness to the recipients in terms of the method of implementation (location, duration) and in terms of content (planning time, expre-ssing one’s needs); and scope (in addition to users and personal assistants, family members should be included).

- Stronger media promotion and additional infor-ming of unemployed persons through the em-ployment bureau would be useful in motivating personal assistants. In addition, the circle of per-sonal assistants can be expanded by engaging younger retirees.

Overview of the accomplishments

and obstacles from the perspective of interviewed

stakeholders

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7. Overview of the accomplishments and obstacles from the perspective of interviewed stakeholders

The diversity of the intial evaluation qestions and the diversity of the methodological approaches to answering them result in the need for a synthesis of the empirical elements of the evaluation before addressing formal issues connected to introducing personal assistance into the system of rights of per-sons with disabilities.

With that purpose in mind and summarising the previous three chapters, we prepared a table over-view of the key accomplishments and obstacles of the Project, as seen from the perspective of the

interviewed users, personal assistants and project leaders. The criterion for listing a comment was its frequency. In other words, the table contains only those comments that were repeated and not the opinions of individual persons.

In the right column of the table we outline possible ways of intensifying the positive effects of the Proj-ect and of adopting the remarks as a constructive contribution to the further development and qual-ity improvement of personal assistance.

We believe it is extremely important to emphasise the positive context of the abovementioned com-ments, which is confirmed by a number of indi-vidual and social effects of the Project pointed out by all the participants. We also mention once again the very high average grades of user satisfaction with different aspects of the service, as well as the assistants’ satisfaction with different aspects of their work, including those aspects that received a lot of criticism! Therefore, the mentioned criticism has to be interpreted in that relative sense - exclusively as challenges and guidelines for perfecting an already highly satisfactory service.

EVALUATION FINDINGS RECOMMENDATION

The positive effects of introducing personal assistance on:

- the achievement of daily activities and the social inclusion of personal assistance users (PAUs)

- greater independence and dignity of PAUs

- widening the PAU social network

- widening the spectrum of activities available to PAUs

- better family relations and less burden on the PAU families

- positive changes in PAUs’ mood, physical appearance and physical fitness, and in their perception of disability

- acquiring new skills and roles (PAUs and PAs)

- employment of members of social groups distant from the labour market

- change in the social perception and attitudes towards persons with disabilities

- include personal assistance among the rights of persons with disabilities

Overview of the accomplishments and obstacles from the perspective of interviewed stakeholders

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Good relations between PAUs and PAs

- PAUs’ full satisfaction with the PAs’ responsibility, efficiency, and abilities

- making sure that PAs do not decline tasks and that there are no disagreements

- PAUs’ self-perception as mostly or extremely tolerant employers

- self-perception of most PAUs as very rarely demanding, or only occasionally demanding towards PAs

- full satisfaction of PAs with their communication with PAUs, with the work results, and with their acceptance by the PAU families

- support and stimulate by regular monitoring and counselling work

- anticipate clear options for replacing PAs in case of sick leave or annual leave (finding assistants, source of payment...)

Insufficient informing of potential PAUs on the service - in the future, inform potential users on all available rights and services, including personal assistance - both directly and through means of public informing

The possibility of applying for competition primarily for those persons with disabilities who are members of associations

- enable access to the competition (i.e. the service) for potential users who are not members of associations

The extent of the documentation required for realising the various rights of persons with disabilities

- make the register of persons with disabilities more functional and accessible to expert evaluation bodies for different purposes

- consider the possibility of forming a single expert evaluation body for different purposes (social welfare services, but also other systems – housing, education, employment...)

The weaknesses of the current monitoring method and record-keeping:

- differences in the frequency and method of service monitoring applied by project leaders

- PAs fill in the monitoring lists for most PAUs

- inability to plan in detail due to changes in the PAU’s health condition

- repetition of activities

- a too detailed analysis of all the activities and their duration

- discomfort due to access to PAUs’ intimacy

- inadequate graphic design of the lists – inability to show the PAs’ extended work hours, multiple arrivals in a single day, or night-time duty

- develop monitoring and service quality control mechanisms

- simplify the record-keeping procedure; e.g. monthly reporting, different form layout

Suggestions on the selection of PAs - in selecting PAs, take into consideration the respondents’ opinions on the desirable profile of PA

- media promotion of the vocation of PA

- informing the unemployed on the vocation of PA

- consider the possibility of engaging retired persons in good mental and physical health as PAs

Overview of the accomplishments

and obstacles from the perspective of interviewed

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Insufficient working hours

- 64 percent of interviewed PAUs are not satisfied with the approved working hours: 24 percent of respondents want up to 2 additional hours per day – primarily for social inclusion; 16 percent want up to 2 additional hours per day – primarily for weekends, night-time duty or travel; 24 percent or respondents with an intense need for support want 2 to 4 additional hours per day – primarily to decrease the burden on their families

- 60 percent of interviewed PAs believe that “their” PAU needs additional 1 to 4 hours of support per day for independent living in the community (in addition to the support that they themselves provide, and in addition to other available assistance)

- many PAs express the desire and ability for greater engagement

- consider the possibility of increasing the working hours for persons with an intense need for support

- at the PA’s request, consider the possibility of providing assistance to more than one user (e.g. when two users live near each other)

- consider the possibility of increased working hours for social inclusion activities of PAUs from rural communities, and/or higher reimbursement of travel costs incurred in traveling to city centres

Disagreements in understanding the PA labour rights depending on the contract type

- clearer informing of PA on their labour obligations and rights depending on the contract type

- consider the possibility of higher travel cost reimbursement for assistants living far from the PAU’s place of residence, and/or for those PAs who do not have regular public transport available

The weaknesses of the training

- non-implementation, or delay for a number of PAUs and PAs (10 percent of interviewed PAUs did not go through training, and the training for two PAs was delayed)

- objections on the duration and content

- distance of the training location from the PAUs’ place of residence

- longer training

- content additions: on the specific needs of persons with different types and etiologies of disability, practical training on medical care and first aid, information on the PAUs’ psychological problems and changes that occur due to the progression of physical illnesses, as well as topics in time management, communication skills and interpersonal relations, and PA labour rights

- improve training materials

- support the inclusion of PAUs and experienced PAs into the training process

- training PAUs on time management and expressing their needs

Problems connected to the lack of social sensitivity for persons with disabilities (mobility, accessibility, social at-titudes, PAU unemployment...)

- continuous work on the adaptation of private and public spaces, and on universal design

- continuous effort to increase social sensitivity for the needs of persons with disabilities

- empowering persons with disabilities for self-representation

- continuous work on equalising opportunities for the education and employment of persons with disabilities

- supporting life-long education of persons with disabilities

- an objective assessment of the working capacity of persons with disabilities, and professional advising and rehabilitation

Overview of the accomplishments and obstacles from the perspective of interviewed stakeholders

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Personal assistance – from project to

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5134 The Republic of Croatia prepared the Joint Memorandum on Social Inclusion and the National Action Plan for implementation as part of its EU accession obligations, signed by the Government of the Republic of Croatia and the European Commission.35 Community-based services – community services can be defined as services organised at the community level, in partnership with the community, with the users ncluded in the decision-making on priority needs, planning and the evaluation of services. Translated and adopted from: Chiriacescu, D. (2006). Ensuring access of people with disabilities to social services: The need for regulatory mechanisms in South East Europe. Available at: www.disabilitymonitor-see.org/documents/Regulatory_mechanisms_HISEE.pdf36 Joint Memorandum on Social Inclusion of the Republic of Croatia (2007). Available at: www.mzss.hr/hr/ministarstvo/

strategije_i_planovi/zajednicki_memorandum_o_socijalnom_ukljucivanju_rh, str. 22.37 Law on Social Welfare, Article 78a38 Chiriacescu, D. (2006). Ensuring access of people with disabilities to social services: The need for regulatory mechanisms in South East Europe. Available at: www.disabilitymonitor-see.org/documents/Regulatory_mechanisms_HISEE.pdf

8. Personal assistance – from project to rights

The Pilot Project of Personal Assistant for Persons with the Most Profound Type and Degree of Dis-ability, along with the outcomes for users that were mentioned in previous chapters, directly contrib-utes to the equalisation of opportunities for persons with disabilities. In the context of the europeisation of social policy34, and of the fact that the European Union itself is one of the signatories of the UN Con-vention on the Rights of Persons with Disabilities, we can say that there is an increasing trend towards efforts at experimenting and introducing a more diverse set of measures and social services which result in the equalisation of opportunities. How-ever, persons with disabilities in Croatia still have a very limited set of services at their disposal, and therefore a narrow choice when compared to their diverse needs. Recognising the existing shortcom-ings of the social welfare system, the goal was set of ensuring that users receive services in their homes and local communities (community-based servic-es35), which create the conditions for integration and rehabilitation in the community itself.36 It has also been recognised that the development of so-cial services greatly depends on the partnership be-tween the State, civil society organisations and the private sector, which introduces the principle of the plurality of service providers.37 However, even in a system which has various service providers, it is the State, i.e. its institutions, which are responsible for ensuring access to sustainable, just and high-quality

social services that satisfy the diverse and changing needs of persons with disabilities. In addition, it is under the competence and responsibility of state institutions to establish regulatory mechanisms, to create basic quality standards for service provision, a quality control mechanism for service provision, and to manage public finances.

In examining the purpose of social services, we need to step away from the relatively narrow per-ception that is still dominant in Croatia. Namely, these services are frequently conceived in the sense of satisfying exclusively specific social needs such as housing, social welfare for children, senior citizens, or persons with disabilities, social security and simi-lar social protection measures. But, social services can be of crucial importance in achieving ‘full civil status’ for persons with disabilities, provided:

- they satisfy users’ individual needs;

- they are available in the community in which the user is living;

- they contribute to full integration;

- they are based on a double approach; they allow persons with disabilities to participate and to use all services used by persons without disabi-lities in different aspects of life and work, such as education in regular educational institutions, while at the same time ensuring that their speci-fic needs for full participation are met;

- they support the participation of various stake-holders in service provision.38

This definition of the content and purpose of social services entails linking social services with other sys-tems (education, employment, housing, health care, culture) with the purpose of improving the standard

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and quality of life and social inclusion, especially for those individuals and groups that are in a disadvan-taged position. If the introduction of personal assis-tant is seen in the context of this definition, then its function is twofold: to satisfy the users’ basic living needs, and to allow access to other rights and ser-vices that guarantee the right of choice and equality while respecting diversity.

8.1. Comparing personal assistance with similar services

The purpose of comparing personal assistance with other support services in the social welfare system is primarily to point out its additional value in relation to other services currently available for persons with disabilities in the Republic of Croatia. Namely, the introduction of personal assistance should not lead to the inability to realise any of the existing rights. However, since one of the tendencies of the reform

efforts in the social welfare system is to consolidate different services and reimbursements, it is possible to anticipate arguments in favour of consolidating personal assistance with one of the existing rights.

Social assistance is defined as a “set of compensa-tions and services which guarantee an existential minimum for people in need, starting with a review of their income and property status.” (Šućur) The basic function of social assistance is to prevent ex-treme poverty and to maintain social integration, i.e. prevent social exclusion. If personal assistance is defined as a type of social assistance, it should also satisfy these two functions. According to this defini-tion, the role of personal assistant would depend on the income and property status of the user, and its provision should ensure the social integration of the users.

In the following table, we outline types of social as-sistance classified according to user groups and the corresponding forms of assistance.

Tip pomoći Korisničke skupine Oblici pomoći

General assistance - all persons whose income is below a certain level

- assistance for support

Category-based assistance - senior citizens

- persons with disabilities

- single parents

- families with children

- families with children with special needs

- the unemployed

- widows

- children without parental care

- caregivers

- personal disability payment

- unemployment compensation

- assistance and care supplement

- in-home assistance and care

- care outside one’s family in foster families, social welfare institutions or in other legal entities (permanent, weekly, temporary, full-day, half-day, occasional, and organised housing)

- the right to obtain the status of parent/caregiver

- counselling services

Tied assistance - users of regular assistance, or groups that do not have the right to general or category-based assistance

- housing assistance

- fuel assistance

- one-time assistance

- nutrition assistance

- clothing and footwear assistance

- assistance for permanent accommodation users

- covering of funeral costs

Table IV.: Types of social assistance

Source: Šućur, Z.: Social policy systems – system of social assistance, power point presentation


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39 Law on Social Welfare, Edited text, Official Gazette 73/97, 27/01, 59/01, 82/01, 103/01, 44/06 and 79/07.40 The right to financial compensation is provided to a single person or family without means of supporting themselves, in the amount determined by the Law on Social Welfare.41 Assistance in covering housing costs is connected to the property status of a single person or family and housing standards. The apartment cannot exceed the basic housing standards for a single person or family, which are prescribed by the minister in charge of social welfare issues.42 The right is given to one of the parents of a child needing specific care.43 Personal disability allowance (Article 55): The right to a personal disability allowance applies to a person with a profound physical or mental disability or to a person with severe permanent change in their health status, provided that the damage or change occurred before 18 years of age, unless personal disability allowance is granted on other grounds.44 The right can be realised by persons with physical or mental impairment or psychiatriy disorder, whose medical condition is deter-mined in accordance with the Law on Social Welfare upon the completion of primary, secondary or tertiary education, not before 15 years of age. The local relevant centre for social welfare decides on the recognition of that right.45 The right to the supplement can be realised by a person to whom the permanent assistance and care of another person is indispens-able due to physical or mental disability, permanent change in health status, or age, because that person cannot fulfill their primary needs. A user with a secured permanent or weekly accommodation in accordance with the Law on Social Welfare cannot enjoy the right to the assistance and care supplement. A user with a personal disability allowance cannot enjoy that right either.46 Assistance and in-home care can be approved to a person who strongly needs the assistance and care of another person because they are not able to satisfy their basic living needs due to physical or mental impairment, permanent changes in health status, or age. The user who was granted the assistance and care supplement can, in exceptional circumstances, also receive assistance and care in order to satisfy individual needs from Article 51 of the Law, those which cannot be fulfilled by family members. In-home assistance and care can be approved for an adult person with physical or mental impairment or psychitric disorder, by providing services of psychosocial rehabilitation which are provided as expert assistance in the family (medical support), in the form and using the method appropriate for the user’s age, the type and degree of physical or mental impaiment, i.e. the type and severity of psychiatric disorder.47 According to Article 61, care outside one’s family covers all forms of accommodation and stay in a social welfare institution or another legal entity providing social welfare in accordance with Article 105 of the same Law, in a foster home, foster family and organised hous-ing.48 Article 77 and Advising and assisting in overcoming special difficulties is a systematic expert assistance the aim of which is to over-come adversity and hardship more successfully, to create the conditions to preserve and develop personal opportunities... It is provided to a single person or to a family on the grounds of difficulties connected to problems of disability, inclusion in daily life after a prolonged stay in a social welfare institution... it includes legal assistance... ‘

According to the Law on Social Welfare39, persons with disabilities can enjoy their rights enshrined in the social welfare system according to the same conditions as other citizens. These rights include the right to financial assistance (Article 1540), right to as-sistance with housing costs (Articles 34, 35, 3641, and the right to obtain the status of parent/caregiver (Article 77a42). In the latter case, however, this right does not apply to a parent who has a recognised right to care outside one’s family within housing and stay, as well as in cases when the parent is unable to provide necessary child care due to his/her mental and/or physical state. Personal assistance is aimed at persons with the most profound degree of disabil-ity; hence we can assume that the right to personal assistance will exclude the possibility to enjoy the right to the status of parent/caregiver.

Given the fact that personal assistance is intended for persons with disabilities, it can be compared with other forms of category-based assistance aimed at persons with disabilities as outlined by the

Law on Social Welfare: personal disability payment (Article 55)43, right to unemployment compensa-tion (Article 59a44), assistance and care supplement (Article 43)45, in-home assistance and care (Article 50)46, right to care outside one’s family47 (Article 61), and counselling services (Article 77i)48.

It is obvious that, apart from the financial assistance rights which will for the purposes of this evalua-tion be discussed only in the context of the user’s property status, the Law on Social Welfare contains rights that include the physical and legal assistance of other persons, such as the right to in-home as-sistance and care and counselling services. The right to in-home assistance and care represents a specific type of service provision in the community, and in its content it covers some aspects of satisfying the users’ living needs foreseen in the personal assis-tant pilot project. The right to external assistance and care can be realised by “persons who strongly need the assistance and care of another person due to physical or mental impairment, or permanent


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49 However, this option can also be considered in the light of the National Implementation Plan for Social Inclusion, Measure 3.4.1. Deinstitutionalisation, where the first phase focuses on the analysis of users’ individual needs and on the preparation of users to leave the institution, and the second phase focuses on organising expert assistance in local communities for persons preparing to leave the institution. Experiences of personal assistance could serve as a signpost for creating and implementing these activities.50 The content of this service could be interpreted in the sense of the user – a person with a disability – getting advice/information on how to realise other rights, etc.51 According to the Law on Social Welfare, Family Centres are social welfare institutions.

changes in health status, or due to age” (Article 50). Such a potentially wide scope of users is limited by the Law provision stating that the user of the right can be a person in whose family the income per family member does not exceed 300 percent of the set baseline.

There are three major differentiating points be-tween the right to assistance and care and the per-sonal assistance in the pilot project. The first is the difference in the circle of users that can realise that right: users of the right to assistance and care can also be persons with mental impairment / intellec-tual difficulties. The second is the difference regard-ing the relevance of the user’s property status, i.e. the user’s family. The third very important point is the duration and method of service provision. This type of assistance is available up to 5 hours per week, and it is organised through social welfare institutions and other legal entities providing social welfare, unlike services in the personal assistant pilot proj-ect, where services are available in the duration of 4 hours per day and are organised by associations.

Care outside of one’s family covers permanent, weekly, temporary accommodation, full-day or half-day stay and organised housing (Article 62) for users over a longer period of time. The purpose of accom-modation, stay or organised housing is to satisfy users’ needs: housing, meals, maintaining personal hygiene, care for one’s health, tendance, education, nursing care, work activities, psychosocial rehabili-tation, use of free time and transport organisation. Although the content of these services partly cor-responds to the content of personal assistance, es-pecially with regard to satisfying basic living needs such as maintaining personal hygiene, care for one’s health and nursing care, the important distinction is the fact that personal assistance insures the us-ers’ right to choose and control the type and qual-

ity of the service. Although it is possible to imagine personal assistance for a smaller number of users of permanent or weekly housing who are being pre-pared for reinclusion into the community as part of the deinstitutionalisation process, the likelihood of such a service being implemented in the context of the limited resources is small.49 However, when it comes to full-day or half-day stay, personal assis-tance could have an important role as prevention of institutionalisation. The right to temporary stay could be considered as a service supplementing personal assistance.

The service that contains, to a certain degree, ele-ments for comparison is the right to counselling and overcoming personal difficulties. It is defined as systematic and programmed assistance with the purpose of more successfully overcoming life diffi-culties, creating the conditions for maintaining and developing personal potential (Article 77i of the Law on Social Welfare)50, as a rule, taking place in the user’s home. Counselling is a service provided by expert staff of the centre for social welfare and the family centre.51

In addition to counselling, family centres provide other kinds of prevention services to individuals and families, including persons with disabilities, and they support the development and advancement of extra-institutional (community-organised) forms of support for children, youth and other socially dis-advantaged groups.

Alongside these rights from the social welfare sys-tem, persons with disabilities who are employers can also realise the right to the co-financing of personal assistant (assistant in work) and the right to the co-financing of job coach, in accordance with the Deci-sion on the Ways of Securing Incentives of the Fund for Professional Rehabilitation and Employment of Persons with Disabilities. It can be said that profes-


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sional rehabilitation of persons with disabilities has recognised the support types necessary for the in-clusion of persons with disabilities in the open la-bour market. The abovementioned Decision defines personal assistant (person helping in work ac-tivities) as a “person who temporarily assists a per-son with a disability in performing certain activities that the person with a disability, due to the type and degree of disability, cannot perform alone” (Article 14 of the Decision on the Ways of Securing Incen-tives). In order for an employer of an employee with a disability to realise their right to the co-financing of personal assistant, the employer must submit the employment contract to the Fund, proving that the person with a disability is permanently employed, as well as a “detailed description of the job, with data showing what percentage of the working hours relates to activities that the person with a disability cannot perform independently due to the type and degree of disability. (Article16). The Fund pays the employer for this type of service provided for em-ployers and employees with disabilities. The scope of the work of personal assistant- work assistant, although focused on the work process, partly cor-responds to the content of the work of personal as-sistants, especially when it comes to activities that the person cannot perform independently due to the type and degree of disability. However, there are differences in the duration of the service provision. The Fund Decision states that this is a temporary service. The crucial difference is the fact that this right is used by the employer.

The right to the co-financing of part of the costs of job coach, a person helping the person with a dis-ability in mastering the work process in the maxi-mum duration of four months from the day of sign-ing the employment contract (Article 43), is also the right of the employer. The decision maker has clearly outlined the role, content and length of the engagement of job coach. The impression is that the decision maker has in effect concluded that, if the employee with a disability is unable to success-fully master the necessary work processes with the help of the job coach in the determined time pe-riod, then the job description does not correspond to the employee’s knowledge and skills. In practice,

people working as job coaches could be persons with educational and rehabilitation background who are familiar with the work processes, but also existing employees with additional knowledge on the specific needs of persons with disabilities.

Although these two rights are used by employers within the labour and employment system, they are actually forms of support services for employees with disabilities, especially in the case of personal assistant (work assistant). It therefore seems justified to consider the possibility of combining personal assistance at the workplace with “general” personal assistance, in accordance with the project discussed in this report. Namely, having in mind the need for rational use of financial assets, to avoid parallel mechanisms in the system, and to ensure positive outcomes for the users - especially in terms of the availability of information about different systems within a single system, as well as in terms of how available the rights actually are - personal assistance should also, for a segment of the users, include support in the work process. However, it would be justified to leave the right to a job coach in the la-bour and employment system because of the very specific nature of the tasks involved, tasks focused on work processes. However, in that case it would be necessary to evaluate which persons with dis-abilities can achieve that right within the process of determining the needed support for potential em-ployees with disabilities.

In practice, we also come across the service of as-sistant in the school as a response to the obstacles that pupils with difficulties face in the education system as described in the Law on Primary and Sec-ondary Education. Article 65 of that law foresees the right to appropriate schooling programs and appropriate forms of assistance for pupils with difficulties. The types of difficulties based on which pupils have the right to appropriate educational programs and forms of assistance are prescribed by the minister in charge of education, and determined by the commission. It seems important to point out that the procedure of determining the mental and physical state of a child, i.e. pupil, and the composi-tion of the commission, is determined by the minis-ter in charge of education, with prior agreement of


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the minister in charge of health issues (Article 20 of the Law on Primary and Secondary Education). This can be interpreted as there being an agreement at the regulatory level of the two systems (health and education) which allows for a multidisciplinary evaluation of the pupils’ needs and capacities and the form/s of support that could be provided from both systems. Also, it seems that the concept of “appropriate forms of assistance” can also be inter-preted as support services in the sense of assistants in the school. Therefore, some municipal and city administrations, with the agreement and support of the Ministry of Science, Education and Sport, are implementing projects of assistance in the school. The job description of assistant in the school, ac-cording to available sources, includes four hours per day of direct activity in the teaching process for five days per week, providing support to pupils with difficulties in becoming included in the classroom, overcoming social and psychological obstacles, providing support to teachers and other experts in creating goals, and in the joint development of the individual work plan with the pupil. In terms of its duration, this service is identical to personal assis-tance, in terms of its content it is described as focus-ing more on satisfying specific educational needs, which is only understandable given its purpose, but it may be assumed to contain aspects of self-care as well. However, it seems that the most important distinction in relation to the personal assistant in the pilot project is the fact that assistance in the school does not assume the pupil to be an employer to the assistant, and the user’s age. Users of assistance in school, which is currently organised through the as-sociation, are children/pupils of primary school age.

Although the initial definition of social assistance provides us with a somewhat narrow conception of the system itself, founded on a category-based ap-proach, it seems that the existing framework of the Law on Social Welfare foresees, to a certain degree, a development from social assistance towards ser-vices including multiple providers. It is also apparent that the systems of education and employment are, in some measure, introducing support services in the form of specialised forms of assistance. However, it is necessary to additionally encourage the coordi-

nation and cooperation between the systems, in or-der to provide high quality, timely, just and efficient services to users with complex and changing needs. In that context, it seems that there are elements of the system which could, with certain additions, adopt the personal assistance model and regulate it as a right. It is important to emphasise that the key aspect of the current system is that it requires per-sons with disabilities to prove a high degree of in-capacity if they wish to realise social rights, receive reimbursement and services. On the other hand, the philosophy of independent living, which is indissol-ubly linked with personal assistance, focuses on the capacity of persons with disabilities. In determining the possible ways of organising the personal assis-tant service it would be advisable to take into ac-count this internal tension within the system.

8.2. Possible ways of introducing personal assistance into the system

There is no doubt that personal assistance has con-siderably contributed to a quality satisfaction of the needs of the persons who had the chance to par-ticipate as users in this project. The direct communi-cation with the users, personal assistants and other project participants testifies to this, and additional proof of that can be easily found in the associations’ reports, as well as in the media. Looking at the con-tinuity of almost an entire decade, since personal assistance was introduced in Croatia through the “Independent Living” project initiated by associa-tions of persons with disabilities, and all the way to the “Personal Assistant Project” which is the subject of this evaluation, we could say that, thanks to the policy of small steps and permanent collaboration between civil society organisations, government institutions and other interested parties, sufficient knowledge and experience has been gathered to establish personal assistance as one of the social rights of persons with disabilities. In that respect, the entities responsible for this project have managed to fulfill their goal, namely to create the founda-tions for the proposal of relevant legal regulations. In the final part of this report, we bring proposals


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52 Here we would like to additionally thank Dr. Vesna Bošnjak for her assistance regarding insight into the social welfare systems and for her suggestions in developing this chapter of the evaluation report.53 The concept of holistic assessment was selected on the basis of a comparative analysis of different approaches and instruments of the needs assessment of persons with disabilities, implemented within the project UNICEF Serbia (2008), “The Methodology of Needs Assessment and Planning Support for Persons with Disabilities”, by an external consultant and member of this evaluation team.

on the possible ways of introducing personal assis-tance into the system, based on the insights gained through the preparation of this evaluation.52

The issue of introducing personal assistance into the system includes the defining of:

a) The characteristics of the service users, who, in line with the positive legal provisions, obtain the right to use the service. As part of the pilot project, the focus was on the selection criteria for personal assistance users.

b) The service content, placing it in one of the existing groups of services, clearly distingu-ishing it from similar services, and explaining which services are mutually exclusive. Personal assistance was itemised in the pilot project, and, as we have shown in the previous chapter, it partly overlapped with the existing service of assistance and care provided by another per-son.

c) The basic structural and functional charac-teristics of service providers (which legal en-tities can implement the service, the qualifica-tions and employees’ employment contracts, space, the founding documents of the legal entity and/or type of contract signed with the relevant body, method of accreditation, etc.). In the pilot project, the associations can be con-sidered as the service providers (although the scope of their work did not cover all the menti-oned elements).

d) Who decides on the right to the service, how is the service provider selected for individual users, how is their work monitored, and who is responsible for the registry of those services.

e) What are the financing mechanisms for indi-vidual users, or the total activity of the service provider (for work with a set number of users).

a) Characteristics of service users – according to the holistic needs assessment

The pilot project was intended for persons with the most profound forms of physical disability, and it as-sumes the users’ role as employers of personal assis-tants. The question is, should the latter characteristic exclude from realising this right those persons who are unable to be employers, and/or do their needs cover more dimensions than simply care and assis-tance in movement (for which they need the sup-port of a “third” person). This question dictates the need to consider the content and methods of needs assessment of potential users, and to determine more precise measures of the degree and intensity of the support they need and on which the acquir-ing the right to the service should depend.

In the context of the suggested modalities of in-troducing personal assistance into the system of state care for persons with disabilities, as well as of the valuable experiences of the Pilot Project, it is ex-tremely important to pay attention to the principles of the holistic approach to users’ needs assessment.

The concept of holistic assessment53 implies dif-ferent life dimensions that need to be taken into consideration when determining the strategies and resources which will enable persons with disabilities to realise their right to social participation and op-timum personal development. From that we con-clude that the type and intensity of desirable inter-ventions in an individual case should be determined through a comprehensive analysis of the support necessary in different aspects of the functioning of a person. Therefore, the following aspects, specific of the current condition and functioning of the per-son with a disability, are considered the necessary elements of individual planning:


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54 In other words, protection of mental and physical health, quality of life and human rights – not only of persons with disabilities, but also their family members.

- needs for specific medical care/aid, in the con-text of the anatomical, histological and physiolo-gical status of the organism.

- characteristics of the ability, i.e. capacity to per-form physical (practical), mental and social acti-vities (including self-representation!), indepen-dent of outside influence.

- personality characteristics: interest, motivation, self-acceptance and self confidence, as well as the person’s gender, age-related, social and sociocul-tural (hence also religious and ethnic) identity

- characteristics of the person’s social network

- capacity and functionality of the person’s family

- activities in which the person participates (with regard to their own capacities, as well as the real capacities of their environment)

- activities in which the person wants to, and co-uld participate, with adequate support (with an emphasis on educational and labour-related ac-tivities, but also including recreational and crea-tive activities)

- needs for specific treatment or intervention (e.g. physiotherapy, psychotherapy, professional ori-entation and rehabilitation, psychological coun-selling or psychotherapy)

- characteristics of the person’s housing

Since the abovementioned characteristics change with time and with other changes in life circum-stances, the need for continuous monitoring of the plan implementation, but also for decision revision according to new developments, is understandable.

It is also clear that a holistic perspective in analyz-ing the individual needs of persons with disabilities entails a more detailed analysis of the factors of the physical and social environment. Self-care and the social participation of a person can, in interaction with these factors, be either facilitated or complete-ly disabled. In other words, the degree of the reali-

sation of living habits, i.e. the activities and the role through which a person survives and developes in society, is significantly determined by architectural and social adaptadness, i.e. barriers. Therefore, from the aspect of efficiency, but also of long-term sav-ings in material and human resources, it is necessary to coherently plan the possible solutions, taking into consideration the diversity of the issues, but also the capacity of the system itself.

Using the language of the pilot project, it is possible that, e.g. the architectural adaptation of living space, or an adequate aid device, along with targeted la-bour rehabilitation, is a more durable and better quality solution for certain users and their families than the relatively expensive service of personal assistance. On the other hand, personal assistance can be a very sensible intervention for persons who would, through such support, realise the opportu-nity for independent living, thus leaving or avoiding institution-based care.

In that respect, we need to additionally focus on the users’ family circumstances, not only for prevention and protection purposes54, but also to release ad-ditional family capacities for a high-quality contri-bution to the well-being of the person with a dis-ability. Having in mind that the intensity of needed support is high, as well as the fact that in periods without personal assistant’s aid it is the users’ fam-ily members who mostly provide the assistance, it is advisable that persons with disabilities are offered additional types of support and incentives. This also means that the right to personal assistant should not exclude rights to other social welfare services, rather, these rights should complement each other, or they should be replaced in time with a more ef-ficient combination of services.

Going back to the level of needs assessment and user selection in the personal assistance project, it is worth noting that current experiences of the ex-pert working group represent an excellent basis for possible additions in the direction of the mentioned recommendations. Namely, the overview of project


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55 The Barthel index, users social anamnesis data, lists of needs and monitoring56 This principle is applicable not only in social welfare, but also in other spheres of social activity: education, employment, housing...57 Given the needs for intensive support in performing daily activities of self-care and in social participation.58 I.e., younger than 18 and older than 65.

documentation clearly points to the fact that the existing assessment methodology55 has “touched upon” a number of listed dimensions. This fact signif-icantly facilitates future methodological modifica-tions, as well as holistic individual planning founded on gathered data. Adopting new work practice with potential future users would also assume the recon-sideration and completion of the current users’ needs assessment. We see the justification for this proposed procedure in the fact that forming an integrated and consolidated record-keeping process would enable a much more efficient access to rights and services, one that would be better adapted to users.

In light of all that has been said, it is necessary to precisely determine the relevant bodies, proce-dures, and instruments for the needs assessment of persons with disabilities, as well as for deciding on their rights. That also includes selecting an expert evaluation team, their additional training, as well as finding ways of fuller participation of users and their representatives in this process.

Furthermore, it is advisable that experts of different profiles evaluate in detail the aspect that they are in charge of, so that their findings are understand-able, clear and provide guidance for other team members. Despite differences in the methodology of treatment and monitoring, in operational defini-tions of states and needs, as well as with consoli-dated record-keeping, expert interventions would become considerably more synchronised and gen-erally more sensible.

Finally, by favouring the functional criterion (i.e. the type and intensity of needed support for the user) in selecting an adequate service (or services) from those available, it is possible to bypass the segmen-tation of services according to the causes of risk and of the socially excluding intervention (usually based on medical diagnosis).56

In that respect, having in mind the vision of social inclusion as a chosen direction for the social devel-opment of the Republic of Croatia, it is advisable

to consider the possibility of extending the defini-tion of personal assistance users to persons with intellectual difficulties, as well as to those suffering from severe forms of psychiatric disorders.57 With-out diminishing the importance of the challenge of organising personal assistance for persons with limited or no ability to perform the employer role, we wish to emphasise their potential to contribute, with adequate support, to the life and development of their local community. In deciding on personal assistance, it is also necessary to harmonise in the best possible way the right to personal assistance with analogous responses to the special needs of the population outside the age categories covered by the project58.

b) Service content

Of the eight rights in the social welfare system (per-manent assistance, housing cost assistance, assis-tance and care supplement, in-home assistance and care, personal disability payment, unemployment compensation, care outside of one’s family, and the right to the status of parent/caregiver), personal as-sistance could be introduced as the ninth service (by changing the Law on Social Welfare), but it could also be one of the modalities of in-home assistance and care (see Articles 50 and 51 of the Law).

The proposer of the introduction of the right to personal assistance into the social welfare system should decide whether, and in what way, does this service impact the parallel enjoyment of the assis-tance and care supplement (Articles 43, 44 of the Law on Social Welfare) and the right to assistance and care. According to existing provisions, it is pos-sible, in exceptional cases (those prescribed by the decision of the minister in charge of social welfare), to ensure assistance and care for a user of the as-sistance and care supplement in order to satisfy in-dividual needs which cannot be fulfilled by family members. Given the fact that in this matter the leg-


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islator takes into consideration exceptional circum-stances, it is possible to apply the same approach when it comes to persons with the most profound degree of disability, and leave open the possibility of using both the right to the assistance and care sup-plement and personal assistance, or the right to as-sistance and care together with personal assistance. The decision that these two rights are not mutually exclusive can be justified by the holistic approach to users’ needs, the prevention of institutionalisation, and the fact that the user perspective, as brought in this report, points to the need for additional servic-es, but also the need for granting the right to choice.

The comparison of personal assistance in the previ-ous chapter shows that we need to establish criteria on the conditions under which certain modalities of care outside the family include the personal assis-tance service. That primarily refers to full-day and half-day stay, which, exceptionally, in cases such as the user undergoing the process of deinstitutionalisation or in the case of half-day stay with the purpose of additionally unburdening the family, should not ex-clude personal assistance. Temporary accommoda-tion can be considered as a supplement to personal assistance in certain cases, such as assistant’s annual leave, or period in-between assistants, and in specific circumstances (e.g. insufficient family support due to exceptional circumstances (“respite care”)).

c) Service implementers

Article 54 of the Law on Social Welfare states that in-home assistance and care can be provided by a social welfare institution, religious institution, com-pany, association, and other domestic or foreign le-gal entity, etc. For care outside the family, the advan-tage is given to a social welfare institution, but also to other entities outlined in Article 105 of the Law. Hence, the Law provides for the plurality of service providers.

In the process of preparing proposals on introduc-ing the right to personal assistance, the proposers should decide on the entity responsible for the ser-vice. Here we can consider existing organisational forms, family centres, centres for social welfare, as-

sociations, possibly assistance and care centres, as potential responsible entities; or we can consider new institutions, for example, an agency or centre for independent living or personal assistance. In making that decision, the relation of the costs of es-tablishing a new system in relation to the costs of strengthening the current system for new functions should be estimated. Apart from that, it is necessary to develop quality standards for service provision, foresee both the creators and relevant entities for mechanisms of monitoring the quality of service provision, select user and personal assistant training providers who can also provide supervision, as well as decide on a body to mediate between users and personal assistants in conflict cases or in case of a breach of contract.

Along with the abovementioned regulatory mecha-nisms of monitoring the standards and service pro-vision quality, the establishment of which is in the domain of those proposing the draft proposal for introducing personal assistance into the system, the service provider should also have at their disposal clear criteria regarding the conditions that potential personal assistants must meet. As was the case in the pilot project, in addition to good mental and physi-cal health (certificate of working and business capac-ity can serve as proof for that), a personal assistant should also have completed secondary education, or at least primary education with additional training

However, the user is the one who has the crucial role in training personal assistants for their duties; there-of it is extremely important that the service provider secures the training for persons with disabilities as potential users. Therein lays another important dif-ference between personal assistance and the al-ready existing services in the social welfare system. Personal assistance requires a user equipped for the role of an (responsible!) employer, and it is therefore necessary that the service provider ensures both the training and continuous support for the user in the role of employer. Personal assistants should have the opportunity to undergo continuous train-ing, and their work ought to be monitored by the organisation securing the financial means, and by the user.


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59 Given the fact that we currently have several different “expert evaluation bodies” for the needs of different systems, there is a pos-sibility of insufficient consolidation, paralel systems and long procedures, which constitutes a burden for users. Therefore, it seems to be justified to consider setting up a single expert evaluation body, on the basis of holistic needs assessment, as outlined in this text. Differ-ent systems could then use the findings and assessments of such a body.

d) The decision maker on the right to the service

Option 1

It is important to note that the minister in charge of social welfare prescribes who is in charge of de-termining the type, level and degree of disability for persons who use services corresponding to per-sonal assistance. As in acquiring the right to all other services in social protection, the decision is made by the relevant Centre for Social Welfare. This leads to the conclusion that the transferring of the personal assistant service into the system of rights could fol-low the same procedure, with certain alterations in the sense of including the experiences from the personal assistant pilot project. The working bodies for expert evaluation59 in centres for social welfare could be educated on the work methods of the ex-pert working groups that determined the criteria for personal assistance users in the pilot project, and the protocols currently used by the working bodies could be revised so as to allow for the holistic as-sessment of users’ needs. Here, the emphasis ought to be on the users’ functional attributes, i.e. their ca-pacity for independent living, education and work, and on the types of support needed to achieve the highest possible level of independence.

Given the existing system of determining individual rights in the Law on Social Welfare, one possible way of determining the eligibility criteria for per-sonal assistance would be through an already exist-ing expert evaluation body, if the abovementioned changes would take effect. According to the Regu-lation on the Composition and Work Method of the Expert Evaluation Body in the Procedure of Realising Rights from Social Welfare and Other Rights Accord-ing to Special Regulations (Official Gazette 64/02), expert evaluation is defined as “the procedure of determining the type and severity of physical and mental impairment, type and severity of mental ill-ness, complete incapacity for work, permanent or

temporary change in medical condition, existence of the capacity for independent living, existence of the capacity for independent work, indispens-able need for permanent or temporary assistance and care of another person, and the scope of such assistance and care in the procedure of realising rights in social welfare” (Article 3). According to this Regulation, the expert evaluation body for adults in-cludes a doctor who is a specialist in occupational medicine (as president), a social worker as member, and the following experts: specialist doctors for dif-ferent areas, a psychologist, a defectologist with an appropriate specialisation (Article 4). The findings and the opinion of the expert evaluation body of the first instance, depending on the expert evalu-ation required, contain, among other elements: personal data, social data, medical data, diagnoses stated in the Report of the Relevant Primary Health Care Doctor, summary results of medical examina-tions and inquiries by members of the expert evalu-ation body of the first instance and experts from the list of experts, diagnosis or diagnoses of the expert evaluation body of the first instance containing the illness code according to the relevant international classification of illnesses and related health problems, the existence of the type and severity of health dam-age, existence of the capacity for independent living, existence of the capacity for independent work, existence of full incapacity for work, existence of much-needed permanent or temporary assis-tance and care and its scope (Article 15). According to the regulation, health damage includes physical, mental or psychiatric illnesses due to which a person cannot independently perform activities appropriate for their age, among other aspects, the Barthel index from 0-22 which reflects the inability to indepen-dently maintain personal hygiene and physiological needs, and to independently dress and undress.

The assumption is that the already existing expert evaluation body would require less financial as-sets insofar as that would involve well established


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60 When it comes to the right to personal assistant, service providers can by no means be the ones to decide, regardless of whether they belong to the government or non-government sector. When it comes to individual rights and spending the state budget, the state and the local self-administration cannot delegate the decisions on those rights to other legal entities!61 Holistic assessment is the basis for that, as well as for all aspects of the specific case that are covered by the care and assistance supplement.

mechanisms which would perhaps only need to be strengthened with additional staff and introduced with holistic procedures of needs assessment. The work of that body would certainly need to include experts engaged in the pilot project, ideally experts with user experience of personal assistance. Estab-lishing a completely new expert evaluation body with the aim of implementing the right to personal assistance would likely increase the total cost of in-troducing the service into the system. Unlike the pi-lot project, where the expert working group for as-sessment met only once per year (upon the closing of the competition) due to the nature of the project cycles, expert evaluation on the right to personal assistance should be done based on need, in other words, several times per year.

Option 2

Considering that the pilot project was developed within the Ministry of Family, Veterans’ Affairs and Intergenerational Solidarity, and that the Ministry can, thorugh Family Centres, (see Article 80 of the Law on Social Protection) alongside prevention and counselling, also conduct expert work pertaining to “disability issues”, the idea may be advanced that this Ministry, i.e. Family Centre, decide on the right to personal assistant.60

Option 2 goes against the principle that needs as-sessments for persons with disabilities should be based on a holistic approach to the person within a single methodology, and that, in deciding on one or more rights of an individual user all possible ways of support should be considered at the same time, so as to select those most adequate in a certain pe-riod, as well as in the context of the potential user’ general life situation. It is also important to empha-sise that neither the needs, nor the health and so-cial situation of persons with disabilities are static, hence the relevant body should revise all the ser-

vices and rights of an individual user and harmonise them with new situations. Another reccomended proposal is that personal assistance be able to cover a different number of hours for different intensities of needs, or that it is combined with in-home as-sistance and care and similar kinds of support (e.g. daily stay), when the intensity of the need for sup-port is very high.61 Excluding one service out of this continuum can hardly be justified from an expert point of view, but it is also possible to prevent that by obliging the decision maker to:

(a) use the same expert evaluation body and the same methodology for needs assessment as the Centre for Social Welfare,

(b) to use the methodology prescribed for Centres for Social Welfare in determining the right to personal assistant, and to

(c) obtain the agreement of the relevant Centre for Social Welfare for each individual case for which the Family Centre decides on the right to personal assistant.

In such a division of labour, the Centre for Social Welfare should, in addition to giving its agreement, inform the Family Centre and the user on the impli-cations that using this right has for the user’s other rights in the social welfare system. Deadlines for reaching the decisions should not exceed those ap-plicable were the Centre for Social Welfare respon-sible for reaching the decision.

The issue of the selection and supervision of the ser-vice provider, as well as the supervision of personal assistants, should remain under the competence of MOFVIS, but the review of the decisions and the issue of further use of this service could fall under the co-competence of the Ministry for Social Wel-fare (which should monitor the achievement of all individual user’s rights, and harmonise them with new situations). The same function could also be


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62 The Joint Inclusion Memorandum of the Republic of Croatia (2007). Available at: www.mzss.hr/hr/ministarstvo/

strategije_i_planovi/zajednicki_memorandum_o_socijalnom_ukljucivanju_rh, str. 40.63 ‘Case management conference’which can be defined as a social work method contributing to achieving goals determined by holistic assessment and set out in cooperation with the user. In this process, the user’s capacity is strengthened, and the user is at the same time connecting to systems securing financial assistance and other resources and services. It is crucial that in managing a particular “case” the team cooperates. In this case, we would have a team consisting of social workers of the centre for social welfare and experts from the family centre, so as to encourage the system capacities to provide appropriate services, and at the same time to contribute to the improvement of social policy measures.

SOURCE: www.socialworkers.org/practice/standards/sw_case_mgmt.asp.

performed within a form of partnership between the Centre for Social Welfare and the Family Cen-tre. That would operationalise the conclusions from the Report on the Implementation of the Joint Social Inclusion Memorandum, which state, in the chapter “Strengthening and preservation of the family”, that it is necessary to develop the cooperation between MOFVIS and MHSW in order to implement this mea-sure.62 Such a form and content of cooperation be-tween the centre for social welfare and family centre could result in joint cooperation in dealing with indi-vidual cases, provided that relations are regulated.63

Finally, in a developed system, the accreditation and licensing of service providers (organisations and individuals wishing to provide personal assistance) should be registered within the Ministry of Social Welfare, or a body determined by the social welfare minister.

Option 3 Law on Personal Assistance

Given the fact that the pilot project was developed, i.e. was implemented by MOFVIS, the creation of a separate law can also be proposed. However, we should have in mind that in regulating the right to personal assistant we are not talking about regulat-ing the right to the status of personal assistant, but regulating the right to the service. In accordance with that, the law should be called the Law on Per-sonal Assistance. Besides, we need to consider the fact that this is still a type of social service, and that if a separate law is created, it would be necessary to regulate the obligations of two ministries, i.e. so-cial welfare institutions that are under their compe-tence, regarding the organisation and implementa-tion of the service. We also need to consider how a separate law would reflect upon similar services in the education, labour and employment systems.

In case that the decision makers decide to pursue this option, the following should be considered:

- since the content of personal assistance is close-ly connected to different life cycles of potential users and their changing needs in the area of self-care, education, labour and social inclusion, we need to revise the method and instruments of deciding on individual rights. This primarily refers to various expert evaluation bodies for the needs of different systems looking at indivi-dual segments. Based on the insights from this report, it seems justified to suggest that within this option we should consider forming a single expert evaluation body for adults which would be regulated with this law, and the work of whi-ch would be based on holistic needs assessment and would take into account the experiences of the criteria evaluation commission, with certain modifications, in the same way that they were applied in the personal assistant pilot project. The existence of a separate working body for expert evaluation for children seems justified, given the specific nature of that age group.

- the criteria for realising the right to personal assistance should be revised, taking into consi-deration holistic needs assessment, but having in mind the scope of users as well. Namely, due to the project nature of personal assistance for persons with the most profound degree of di-sability, the service was primarily directed at members of associations of persons with physi-cal disabilities. Regulating the right to personal assistance means widening the circle of users to persons who are not members of associations, but also deciding whether, in addition to per-sons with physical disabilities, the right can also be used by other groups, such as persons with intellectual difficulties, or persons with psychia-


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64 This can also be seen in the table overview prepared by MOFVIS: Ministry of Family, Veterans’ Affairs and Intergenerational Solidarity (2006) “PERSONAL ASSISTANT – Comparison of various states” (Source: Croatian Information Documentation Referral Agency—CIDRA). See also: Askheim, O. P. (2005). “Personal assistance—direct payments or alternative public service. Does it matter for the promotion of user control?” Disability & Society, Vol. 20, No. 3, pp. 247–260.65 The ‘case management conference’ typically assumes that social workers are coordinators in working on a “case”. However, personal assistance can also be seen as a “tool” for enjoying other rights and services. Therefore, it seems that in this specific case, for the purpose of efficiency, it would be possible to give this role to family centre staff.

tric disorders. The argument expressed in favour of excluding these two groups until now states that, according to the principles of independent living, the user’s capacity to undertake the role of employer is a decisive factor. The assumpti-on was that persons with partial or no capaci-ty for work, or persons with difficulties in cases when they have the capacity for work, cannot undertake the role of employers. However, the experiences of those who started the indepen-dent living movement, as well as the legislation of Nordic and Anglo-Saxon countries, speak of ways in which it is possible to regulate the servi-ce for these groups as well.64 To support the fact that the role of employer can partially or fully be transferred to other key individuals, we can use examples from the Decision on the Method and Implementation of Incentives Through the Fund for Professional Rehabilitation and Employment of Persons with Disabilities in case of a job coa-ch, and experiences of projects of assistants in the school, where the mutual cooperation and harmonised action of teachers, the family and pupils are key for the assistants’ work. Of cour-se, given what is said here, the decision maker should clarify the dilemma on the availaibility of the financial assets necessary for extending the circle of users. It is advisable to take into account that the training should also cover a wider sco-pe of users; a greater number of users and assi-stants, but also other key stakeholders, such as family members, and possibly providers of com-plementary services of the social welfare system.

- the need to regulate the obligations and rela-tions of family centres as organisers/imple-menters of the service with centres for social welfare and other persons and legal entities. As in Option 2, it seems crucial to establish coope-

ration with the existing expert evaluation body in centres for social welfare, if no single expert evaluation body is created. As we said, the in-struments and working methods of that body should be revised in accordance with the per-sonal assistant pilot project experiences and the principles of holistic needs assessment, experts with user experience of personal assistance sho-uld be included in the work of these bodies, as well as the family centre staff that would imple-ment the service. That would ensure the direct transfer of valuable experiences from this project into the system, which would not require major additional costs of reorganising the expert eva-luation bodies. In addition to that, this approach could, if the two systems reach an agreement, potentially result in the development and imple-mentation of the practice of joint management in resolving users’ needs (“case management conference”), which entails the cooperation of a team of experts from different systems, where co-ordination is assigned to the staff member who is “running the case”. When it comes to the personal assistance service, the role of coordination could be assigned to family centre staff as well.65

Apart from that, we need to foresee the possibility of subcontracting individual aspects of the service provision, especially for associations which have, within the pilot project, strengthened their own ca-pacities for such type of work.

- the selection and supervision of the service provider would remain under the competence of MOFVIS in this case. MOFVIS should develop quality standards for service provision and regu-late supervisory mechanisms, as well as compla-int-resolving mechanisms. That could be regula-ted by a separate regulation or decision.


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66 Of the total of 101,014 persons who received the Finding and opinion of the expert evaluation body of the first instance at centres for social welfare. Among these, 47% are over 65. Croatian Public Health Institute. Report on Persons with Disabilities in the Republic of Croatia. October 2007.67 The care and assistance supplement was received by 72,555 persons in 2006 and 74,897 persons in 2007. There were 603 users of in-home assistance and care in 2006, and 1,525 in 2007 (since then, according to the Law on Changes and Amendments to the Law on Social Welfare, the right to in-home assistance and care consists of the right to in-home assistance and care, assistance in nourishment, and expert assistance in the family) (Annual statistical report on applied rights in social welfare, legal protection of children, youth, mar-riage, family and persons without working capacity, and on the protection of persons with physical or mental disabilities in the Republic of Croatia in 2007. Available at: www.mzss.hr). A more recent survey points to the problem of the enjoyment of rights due to insufficient informing of persons with disabilities on the methods of fulfilling already existing rights (Zdravka Leutar “Persons with Disabilities and Poverty.” Revija za socijalnu politiku, 2006, god. 13 (3-4): pp. 293-308). This leads to the conclusion that, with the proper functioning of the system, the number of users would be higher, given the fact that potential users would be well-informed and the procedure of realising rights relatively simple.

e) Financing the service: difficulties in estimating the total cost and the financing mechanisms

The basic characteristic of potential users is that they are persons with the most profound degree of disabili-ty who are completely dependent on the assistance of another person in their daily life (getting out of bed, personal hygiene and physiological needs, meals, support in education and labour activities and all other social activities). The mechanisms of financing the service of personal assistance are not necessar-ily conditioned by the number of such persons, but since, to estimate the total financial assets needed, it is necessary to know at least approximately the scope of the target population, we believed it nec-essary to reflect on problems in determining that number.

Namely, within this project it was not possible to reach a final estimate of the total number of persons with the most profound degree of disability, nor was it possible to determine that number while gather-ing data for the external evaluation of the project. An estimate of the Expert Working Group in the pre-paratory phase of the pilot project was that in the Republic of Croatia there is a little over 1000 persons who could be potential users based on that defini-tion, whereas the estimates heard in conversations during this evaluation ranged from 500 to 3000 persons. The large differences in the estimates, as well as the lack of precision regularly emphasised by the persons consulted, are not only a consequence of ignorance or lack of data, but primarily a conse-

quence of different interpretations of the criteria for the “most profound degree of disability”, and of the relevance of additional criteria (family situation, ar-chitectural adjustment, etc.)

According to the data of the Croatian Register of Per-sons with Disabilities, in mid-2007 as many as 51,331 persons needed other people’s full-range care and assistance (Barthel index 0 to 60). However, at least half of those are persons over 65 years of age, those who were excluded beforehand as possible per-sonal assistant users within the pilot project.66 The number of users of the care and assistance supple-ment is very similar, whereas the number of users of in-home care and assistance is closer to the more conservative estimates of the expert working group members and other participants in the pilot proj-ect.67

The need for holistic needs assessment is an addi-tional complicating factor in determining the total number of potential users, since the type and inten-sity of needed support cannot be determined be-forehand on the basis of aggregate data on persons with disabilities. The average cost per user within the pilot project can only partly serve as an indica-tor, given the fact that it was conditioned by param-eters set in advance, such as the maximum number of hours and hourly wage.

The recommendation to the Expert Working Group, i.e. to MOFVIS, is to ask the Croatian Register on Per-sons with Disabilities for additional processing of the existing data according to several basic param-eters, for example, persons with a Barthel index of a


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maximum 30 points68, in the age group between18 and 65 years.69 That number, multiplied with the av-erage cost per user within the pilot project as a basic indicator, could represent the basis for estimating the total amount needed to finance the introduc-tion of personal assistance into the system.

When it comes to financing mechanisms, two dom-inant models are applied in countries with devel-oped personal assistance systems:

- the direct transfer of funds to the user, usually the user has he obligation to use the funds for a particular purpose – personal assistance. The advantages of such a financing model are pri-marily in the increased control the user has over how the service is provided, but it also requires additional knowledge and skills. Given the fact that the social compensation scheme in Cro-atia is undergoing reform, which foresees the consolidation of current compensations such as personal disability payment and the care and assistance supplement, we could consider the possibility of using an increase in the total compensation for persons with the most profo-und degree of disability to cover the means for paying personal assistance.

- the transfer of funds to the service provider, as was the case in the pilot project where associ-ations were performing administrative and fi-nancial tasks. Given the anticipated plurality of service providers, different persons and legal en-tities can undertake that role. For some persons with disabilities, this transfer would be a simpler solution, since they themselves would not have to take care of contracting and administering the service. Upon the introduction of the right to personal assistance, it is possible to expect, as was the case in other countries, the self-organi-sing of users and assistants.

It is clear that the main source of financing should continue to be the State Budget, since differences in county and city budgets should not be allowed to have an impact on the right or the possibilities for creating adequate mechanisms of service provi-sion. In other words, although the principle of de-centralisation should be adhered to in providing the service, its application to the financing of the service seems risky from the perspective of the users and other participants in the pilot project.

8.3. Concluding remarks

The evaluation’s empirical findings clearly deter-mined two basic functions of personal assistance: direct aid to the user in performing daily activities that they are unable to perform alone due to having a disability, and the function of personal assistance as one of the main tools for equalising opportuni-ties. Personal assistance makes possible the satisfac-tion of specific needs, but also provides access to various life, educational and work activities in which persons without disabilities participate. In that way, personal assistance adheres to a rights-based ap-proach: persons with disabilities influence the cre-ation of measures intended for them and seek the realisation of the guaranteed rights, and state in-stitutions try to act in a timely and just fashion in order to enable the full and efficient achievement of rights.

As mentioned earlier, in considering the possible ways of introducing the personal assistance right into the system, the evaluation report made every effort to respect the principles of justice and acces-sibility; affordability; the need for holistic needs as-sessment; the need to develop cooperation and co-ordination between the systems, i.e. to avoid parallel mechanisms in the systems.

68 Or less, up to a maximum of 22 points. In the first competition cycle in 2006, the expert working group considered only groups of users with a B.I. of up to 5. In the following years, the number of points increased to 30, or even somewhat higher in cases of sensory impairment.69 In this, cumulative health problems should be taken into consideration for persons with sensory health problems that were taken into consideration in the pilot project, or in cases of persons with intellectual difficulties who were not included in the project, but who, we believe, should be covered by the right to personal assistance.

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In accordance with that, those issuing the proposal should develop the details of the five basic elements crucial for organising the service, i.e., they need to answer the questions of:

- who has the right to the service, i.e., determine the criteria that potential users must meet;

- what the content of the service is;

- which structural and functional characteristics must the service provider have in order to meet the criteria for that role;

- how the service is to be financed; and

- who decides on the right to the service.

In the last part of this report, we brought recommen-dations based on current insights, outlined several open issues, and pointed in more detail to the three different options for decision makers regarding the right to the service. We should mention that the three options mentioned above are not proposed as mutually exclusive, but that each of these contains elements of the other two. The most important dif-ference between them is the fact that the first two options foresee integration into the existing Law on Social Welfare, while the last one involves a separate Law on Personal Assistance. In all three options, it is important to aim towards cooperation between the ministry and other state bodies relevant for persons with disabilities, and to start the creation of a single expert body for evaluation of the type and degree of disability, since not having such a body in the cur-rent system apparently further complicates matters and makes the realisation of the already existing rights of persons with disabilities more difficult.

As part of the presentation of the evaluation report to the Expert Working Group for Creating the Draft Proposal of the Law on Personal Assistant (Novem-

ber 3, 2008, organised by the Directorate for Fam-ily of MOFVIS), arguments for each of the three op-tions were briefly set out. At that time, the Expert Working Group found the third option - the creation of a separate law that would regulate the right to personal assistance of persons with the most pro-found degree of disability - as most likely. The key argument in favour of creating a separate law with MOFVIS as the institution primarily responsible for implementing the law, was the relative simplicity of creating a separate legal document at the time. Ac-cording to the opinion of the Expert Working Group, the other two options, which would require chang-es to be made in the Law on Social Welfare, seem more complicated and more time-consuming. In addition, the Expert Working Group suggested that MOFVIS be in charge due to current experiences in the implementation of the pilot project, due to the fact that MOFVIS is responsible for the introduction of personal assistance into the system, and is at the same time the coordination body for the implemen-tation of the National Strategy.

In conclusion, it should be noted that public discus-sion on the law on personal assistance might also introduce opinions different from those of the Ex-pert Working Group, thus enabling discussion and determining key system elements. A public discus-sion might also serve as an opportunity to create a supportive atmosphere of cooperation between the implementation bodies of the ministries relevant for issues connected to persons with disabilities. Al-though we cannot expect the provided solutions to fully satisfy all interested parties, we believe that each step towards equalising opportunities and re-alising the full civil status for persons with disabili-ties constitutes an important step forward. We hope that this report has shown that personal assistance represents such a step in the desired direction, and a particularly important one.

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Appendix

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Appendix 1

Overview of the project documents consulted

(Listed in chronological order; documents without date are listed according to an approximate date of creati-on, which is assumed based on the content; forms are outlined separately)

1. “Detailed project description” (including basic

principles of the philosophy of independent li-

ving)

2. Letter from CUAPD (dated February 24, 2006) to

all national unions of associations of persons with

disabilities

3. Letter from CUAPD (dated March 1, 2006) to all

national unions of associations of persons with

disabilities – invitation to a training course for the

Union leaders and project leaders – association re-

presentatives

4. Letter from CUAPD (dated March 8, 2006) to asso-

ciations of persons with disabilities – invitation to

a training course for persons with the most profo-

und degree of disability – potential personal assi-

stance users

5. Program of a training course for persons with the

most profound degree of disability – potential

personal assistance users

6. Letter from CUAPD (dated March 13, 2006) to asso-

ciations of persons with disabilities – invitation to a

training course for potential personal assistants

7. Program of the training course for PAs

8. Letter from CUAPD (dated March 13, 2006) to

associations of persons with disabilities – invitati-

on to a training course for persons with the most

profound degree of disability – potential personal

assistance users and personal assistants from cen-

tral and southern Dalmatia.

9. Participants of the training course for project lea-

ders (March 6, 2006)

10. Participants of the training course for PAUs (March

10-11, 2006)

11. Participants of the training course for PAs (March

16, 2006)

12. Participants of the training course for PAUs (Split,

March 15, 2006)

13. Participants of the training course for PAs (Split,

March 15, 2006)

14. Presentation by Zorislav Bobuš (CUAPD): Indepen-

dent living – philosophy and principles

15. Presentation by Marica Mirić (CUAPD): Indepen-

dent living – personal assistant

16. Presentation by Zorislav Bobuš (CUAPD): Social

model of disability

17. Presentation by Marica Mirić and Zorislav Bobuš

(CUAPD): Types of disability

18. Presentation by Ana Slonjšak (CAPTPC): Examples

of assistance and communication

19. Presentation by Josip Šimičić: PA and a tetraplegic

Appendix 1

72

20. Presentation by Branko Bizjak: Living alone with

personal assistance

21. Presentation by Anđelka Bistrović – Nastić (from

Virovitica): Personal assistance – my experiences

22. Presentation by Zvjezdana Šabanov: My experien-

ces as personal assistant to persons with disabiliti-

es

23. Presentation by Manda Knežević (CAPTPC): Perso-

nal assistant user / employer – the active subject

24. Presentation by Marica Mirić and Zorislav Bobuš

(CUAPD): Ethical code

25. Working proposal of the ethics code for partici-

pants of personal assistance

26. Evaluation of the projects applied by associations

and of the proposed candidates; results, metho-

dology and procedure (prepared by Josip Šimičić,

president of the expert working group)

27. Ministry of Family, Veterans’ Affairs and Interge-

nerational Solidarity (2006) “OSOBNI ASISTENT –

Usporedba različitih država (information source:

CIDRA, Croatian Information Documentation Re-

ferral Agency)

28. Associations’ project documentation for the 2007

competition process (project applications and

narrative reports)

29. Internal evaluation report on the implementation

of the Pilot Project of Personal Assistant in 2007

30. Instructions for the preparation and implementa-

tion of the project of personal assistant for persons

Appendix 1

with the most profound degree of disability www.

mobms.hr/ download.asp?f=dokumenti/Razno/

naputak-osobniasistent2008._1.doc (September

1, 2008)

31. INVITATION to associations of persons with disabi-

lities providing personal assistant support to per-

sons with the most profound degree of disability

in the Republic of Croatia to apply their projects

for financial support from the State Budget of the

Republic of Croatia for 2008. www.mobms.hr/

download.asp?f=dokumenti/Razno/ Tekstnatje-

caja.doc (September 1, 2008)

Forms

Project application form to the Ministry of Family, Vet-erans’ Affairs and Intergenerational Solidarity to obtain financial support for 2008

Needs assessment and monitoring list

Form for confirmation of participation in training cours-es

Form with the user’s social anamnesis data

Survey form for personal assistance users

Survey form for personal assistants

Assessment form for the Barthel index

CONTRACT of cooperation for ensuring a personal as-sistant

73

Appendix 2

References

Askheim, O. P. (2005). “Personal assistance - direct payments or alternative public service. Does it matter for the promotion of user control?” Disability & Society, Vol. 20, No. 3, pp 247–260.

Council of Europe Action plan (2006). Council of Europe Action Plan to promote the rights and full partici-pation of people with disabilities in society: improving the quality of life of people with disabilities in Europe 2006-2015: REC Recommendation (2006) 5 of the Committee of Ministers to member states. Commission of the Government of the Republic of Croatia for Persons with Disabilities, Ministry of Family, Veterans’ Affairs and Intergenerational Solidarity, Zagreb. Available at: www.mobms.hr

Biškup, I. (2008). Iskustva korisnika osobnog asistenta. Unpublished B.A. thesis. Social Work Study Center of the Faculty of Law in Zagreb.

Bošnjak, V. (2006). Promjena paradigme u socijalnoj zaštiti. Contribution for the UNDP JIM counselling event, 24 May 2006 in Zagreb

Chiriacescu, D. (2006). Ensuring access of people with disabilities to social services: The need for regulatory mechanisms in South East Europe. Available at www.disabilitymonitor-see.org/documents/Regulatory_me-chanisms_HISEE.pdf

Da, ti to možeš! (2002). Croatian Association of Paraplegic and Tetraplegic Persons, Zagreb. Available at: www.hupt.hr/yesyoucan/yyc-000.html (Translation of the manual “Yes, you can”, Paralyzed Veterans of America)

Filipović, Lj. (2006) Stanje ljudskih prava osoba s invaliditetom u Hrvatskoj, in: Ljudska prava osoba s invalidi-tetom, pp. 63-105.

Croatian Public Health Institute (2007). Izvješće o osobama s invaliditetom u Republici Hrvatskoj. Available at: http://www.hzjz.hr/epidemiologija/kron_mas/invalidi07.pdf

Leutar, Z. (2006). Osobe s invaliditetom i siromaštvo. Revija za socijalnu politiku, 13 (3-4): 293-308. Available at: http://bib.irb.hr/datoteka/288831.428-997-1-PB1.pdf

Mihanović, V. et al. (ur.) (1999). Standardna pravila o izjednačivanju mogućnosti za osobe s invalidite-tom/ United Nations: Public Information Department. State Institute for the Protection of Family, Motherho-od and Youth, Zagreb.

Available at: resursnicentar.ehons.org/site/page_internal/information_centre/docs.../Standardna_pravila_o_izjednacivanju_mogucnosti.doc

Ministry of Health and Social Welfare of the Republic of Croatia (2008). Izvješće o provedbi Zajedničkog me-moranduma o socijalnom uključivanju Republike Hrvatske, između Vlade RH i EK za razdoblje od ožujka 2007. do lipnja 2008. godine. Available at: www.mzss.hr/hr/content/download/3495/29703/file/Nacionalno_Iz-vjesce%20JIM%2007-08.pdf

Ministry of Health and Social Welfare of the Republic of Croaia (2008). Godišnje statističko izvješće o primije-njenim pravima socijalne skrbi, pravnoj zaštiti djece, mladeži, braka, obitelji i osoba lišenih poslovne sposob-nosti, te zaštiti tjelesno ili mentalno oštećenih osoba u Republici Hrvatskoj u 2007. godini. Available at: www.mzss.hr

Appendix 2

74

Osobna pomoć za neovisni život (collection of texts translated from English and Slovenian) (1997, 2002). Ava-ilable at: www.hsuti.hr/CustomPages/Static/HRV/Files/osobna%20pomoc%20za%20neovisni%20zivot.doc)

Pečarič, Elena (2002). Zamke profesionalizacije osobne pomoći (article presented at the first congress of social work in Portorož, 17-19 October 2002). Personal assistance for independent living.

Commission of the Government of the Republic of Croatia for Persons with Disabilities (2005). Izvješće o provedbi nacionalne strategije jedinstvene politike za osobe s invaliditetom od 2003. do 2006. godine tijekom 2003. i 2004. godinu. Available at: http://hidra.srce.hr/arhiva/10/4648/www.vlada.hr/Downlo-ad/2005/09/30/102-021.pdf

Ratzka, A. (1997). Što je osobna pomoć? Osobna pomoć za neovisni život (collection of texts translated from English and Slovenian) (1997, 2002).

Ratzka, A. (2004). “Model National Personal Assistance Policy.” A project of the European Centre for Excellence in Personal Assistance (ECEPA). Available at: www.independentliving.org/docs6/ratzka200410a.pdf

Ratzka, A. (s.a.). Osobna pomoć. Osobna pomoć za neovisni život.

Razumijevanje invalidnosti. Socijalni model (s.a.). Zajednica saveza osoba s invaliditetom Hrvatske, Zagreb (translation of the brochure The Social Model, Bray partnership, Ireland)

Šimičić, J. (2002). Personal assitant and a tetraplegic, power point presentation.

Šućur, Z. (s.a.). Social Policy Systems – Social Assistance System, power point presentation.

UNDP Croatia (2006). Neumreženi: Lica socijalne isključenosti u Hrvatskoj. Report on social development.

UNDP Croatia (2008). Towards a positive legislative framework for people with disability in the Republic of Croatia: a gap analysis (draft report)

UNICEF Serbia (2008). Metodologija procjene potreba i planiranje podrške osobama s invaliditetom (unpu-blished report)

Government of the Republic of Croatia (2003). Nacionalna strategija jedinstvene politike za osobe s invalidi-tetom od 2003. do 2006. godine. Official Gazette 13/03

Government of the Republic of Croatia (2007). Nacionalna strategija izjednačavanja mogućnosti za osobe s invaliditetom od 2007. do 2015. godine. Official Gazette 63/07

Zajednički memorandum o socijalnom uključivanju Republike Hrvatske (2007). Available at: www.mzss.hr/hr/ministarstvo/strategije_i_planovi/zajednicki_memorandum_o_socijalnom_ukljucivanju_rh

Zakon o potvrđivanju Konvencije o pravima osoba s invaliditetom i Fakultativnog protokola uz Konvenciju o pravima osoba s invaliditetom (2007). Official Gazette – International contracts 6/07.

Zakon o socijalnoj skrbi (Urednički pročišćeni tekst) Official Gazette 73/97, 27/01, 59/01, 82/01 , 103/03, 44/06 and 79/07.

Znaor, M., Janičar, Z. and Kiš-Glavaš, L. (2003). Socijalna prava osoba s invaliditetom u Hrvatskoj. Mirovinsko osiguranje. Revija Hrvatskoga zavoda za mirovinsko osiguranje. Available at: www.mirovinsko.hr/UserDocsI-mages/publikacije/revija/3/003-020.pdf

Živanović, M. and Madački, S. (ed.) (2006). Ljudska prava osoba s invaliditetom. Stanje u Bosni i Hercegovini, Hrvatskoj i Srbiji i Crnoj Gori, Human Rights Centre of the University of Sarajevo. Available at: www.civilnodru-stvo.ba/files/docs/biblioteka/istrazivanja/ljudskapravaosobasainvaliditetom.pdf

Appendix 2

75

Appendix 3

Questionnaires for personal assistance users and personal assistants

The final version of the questionnaire for personal assistance users

* Introductory instruction

1. Gender: M F

2. Year of birth: 19___

3. County:________________________

4. Are you employed? a) NO b) YES

5. How did you find your personal assistant?

a. We knew each other before

b. Through association membership

c. Competition, advertisement

d. Through the Employment Bureau

e. Recommendation

f. Other (please elaborate)

6. Do you think that education sufficiently prepared you for successful cooperation with the personal assistant?

a. Yes, completely

b. Mostly yes

c. Partly

d. Mostly no

e. Not at all

Appendix 3

76

7. Which additional content should, in your view, be included in future training?

____________________________________________________________________________________

8.How long did it, in your assessment, take to become used to a personal assistant?

_____________________________________________________________________________________

9. Who helped you earlier in the tasks and activities in which the personal assistant provides you with support now?

a. Family member(s) – without financial compensation

b. Family member(s) – with financial compensation

c. Neighbors, friends, acquaintances – without financial compensation

d. Neighbors, friends, acquaintances – with financial compensation

e. Volunteer(s) from humanitarian organisations

f. Conscripts

g. Paid staff

h. No one

10. Which abilities and characteristics do you consider to be most important for the job of personal assistant?

_____________________________________________________________________________________

11. Do you believe that the personal assistant is sufficiently paid for his/her work? a. NO b. YES

12. Does the personal assistant sometimes refuse to do something that you have foreseen in the work plan?

a. NO b. YES

If your answer to this question was “YES”, please explain briefly what these tasks were, and how you resolved such situations?

Reason: _______________________________________________________________________________

Method of resolution:____________________________________________________________________

Appendix 3

77

14. Mark the answer that describes your satisfaction with the following aspects of personal assistance:

Not satisfied at all

Mostly not satisfied

Unsure Mostly satisfied

Completely satisfied

PROCEDURE OF APPLYING TO HAVE A PERSONAL ASSISTANT (PA) APPROVED

APPROVED NUMBER OF WORKING HOURS FOR PA

FLEXIBLE PA WORKING TIME

NEED TO PLAN PA TASKS

NEED TO MAINTAIN RECORDS ON PA WORK

COMMUNICATION WITH PA

PA CAPACITIES (knowledge, skills)

PA RESPONSIBILITY

HIS/HER EXECUTION OF THE WORKPLAN

COMMUNICATION WITH THE PROJECT LEADER

15. Did you have disagreements with the project leader or some other member of the association?

a. NO b. YES

If your answer was “YES”, please briefly describe the reason for the disagreement and the method of resolution

Reason: _______________________________________________________________________________

Method of resolution: ____________________________________________________________________

16. Do you believe you are tolerant towards your personal assistant?

a. Yes, extremely

b. Mostly yes

c. Unsure

d. Mostly no

e. Not at all

Appendix 3

78

17. Do you believe you are demanding towards your personal assistant?

a. Yes, extremely

b. Mostly yes

c. Unsure

d. Mostly no

e. Not at all

18. Did you, thanks to the personal assistant, start an activity that you had wanted to do for a long time, or some-thing that was very important to you, but was inaccessible in the past?

19.A. How many times per week do you go out with your personal assistant?

a. Every, or almost every day

b. 4-5 times per week

c. 3-4 times per week

d. 2-3 times per week

e. Once per week

f. Never

19.B. Which places do you go to with your personal assistant?

a. Walking YES NO

b. Shopping YES NO

c. Medical institution YES NO

d. Bank, post office YES NO

e. Coffee bar, restaurant, cake-shop YES NO

f. Cinema, theatre, exhibitions, libraries YES NO

g. Recreation and sports YES NO

h. Attending sports manifestations YES NO

i. Religious needs YES NO

j. Socialising with friends YES NO

k. Job, school, additional training YES NO

l. Association YES NO

m. Other (elaborate) YES NO

Appendix 3

79

20. How satisfied are you with your inclusion in community life?

a. Not satisfied at all

b. Mostly not satisfied

c. Unsure

d. Mostly satisfied

e. Completely satisfied

21. Please estimate how much control you have over the following aspects of your life since having had a per-sonal assistant at your disposal!

same as before more than before less than before

A. Physiological, medical and hygienic needs

B. Clothes and personal care

C. Housing

D. Going out

E. Socialising

F. Recreation

G. Work or other regular daily activity

H. Other

22. Since having had a personal assistant, have you made new acquaintances?

a. YES

b. NO

23. Do you notice any changes in your relations with your family?

a. Less burden on the family YES NO

b. A better relationship YES NO

c. Other (elaborate)___________________________________________________________________

24. How did your family accept the personal assistant?

_____________________________________________________________________________________

25. Have your relations with other people changed (outside of the family circle)?

a. NO

b. YES

If the answer was “yes”, how have they changed?

_____________________________________________________________________________________

Appendix 3

80

26. Do you feel any other changes that you haven’t mentioned, and that you notice on / in yourself since having had a personal assistant?

a. In physical appearance YES NO

b. In mood YES NO

c. In self-perception YES NO

d. Other (elaborate)__________________________________________________________________

27. Which needs of yours are still not covered, despite the personal assistant and other available assistance? Please outline the activities in which you require additional help of other persons, and what you think the dura-tion of such help should be!

_____________ hours for the following activities ________________________________________________

28. Can you estimate your monthly costs for needs that are a consequence of disability (e.g. medications, aid de-vices, etc.)?

__________ HRK

29. Do you have expenses that are a consequence of disability which you cannot cover from your current income?

a. NO

b. YES

If the answer was “YES”, what are these expenses?

_____________________________________________________________________________________

30. What makes the personal assistant’s help different from other social rights that you have on the basis of dis-ability?

_____________________________________________________________________________________

31. Which changes would you suggest to improve personal assistance?

_____________________________________________________________________________________

If you have additional questions, complaints, or suggestions, please state them here!

_____________________________________________________________________________________

_____________________________________________________________________________________

_____________________________________________________________________________________

_____________________________________________________________________________________

* A THANK YOU NOTE

Appendix 3

81

Appendix 3

Final version of the questionnaire for personal assistants

* uvodna instrukcija

1. Gender M F

2. Year of birth: 19___

3. County: _______________________

4. Qualifications: __________________

5. How long have you been working as assistant to a person with a disability?

a. Less than 6 months

b. Between 6 and 12 months

c. Between 12 and 18 months

d. Between 18 and 24 months

e. More than 2 years

6. Prior to gaining employment as personal assistant, have you performed tasks involving care and assistance to another person (e.g. person with a disability, an illness, or an elderly person)?

a. No

b. Yes, on a professional basis

c. Yes, on a voluntary basis

7. How long were you unemployed prior to your current employment?

a. Less than 6 months

b. Between 6 and 12 months

c. Between 12 and 24 months

d. Between 2 and 5 years

e. Between 5 and 10 years

f. More than 10 years

82

8. Do you think that the training for personal assistants provided all the necessary information to successfully perform on the job?

a. Yes, completely

b. Yes, mostly

c. Partly

d. Mostly not

e. Not at all

9. Outline additional topics that should, in your view, be included in future training?

_____________________________________________________________________________________

10. Which characteristics and abilities do you consider most important for the job of personal assistant?

_____________________________________________________________________________________

11. Which additional knowledge and skills would facilitate your task of providing support to a person with a disability?

_____________________________________________________________________________________

12. Do you consider the job of personal assistant to be stressful?

a. It is not stressful at all

b. It is mostly not stressful

c. It is occasionally stressful

d. It is mostly stressful

e. It is extremely stressful

Appendix 3

83

Appendix 3

13. Please mark the answer that best describes your level of satisfaction with the following aspects of the job:

Not satisfied at all

Mostly not satisfied

Unsure Mostly satisfied

Completely satisfied

WORK CONTENT

NUMBER OF WORKING HOURS

FLEXIBLE WORKING HOURS

EARNINGS

NEED TO KEEP WORK RECORDS

COMMUNICATION WITH THE PROJECT LEADER

COMMUNICATION WITH THE USER

ACCEPTANCE BY THE USER'S FAMILY

WORK RESULTS

14. Which difficulties do you come across in doing the job of personal assistant?

_____________________________________________________________________________________

15. Have you had any disagreements with the person you assist in the course of doing your work, or with the members of that person’s family?

a. NO

b. YES (Please describe the reason in brief, and the way it was resolved!)

Reason: _______________________________________________________________________________

Method of resolution:____________________________________________________________________

16. Who do you get the support from in your work?

_____________________________________________________________________________________

17. What do you consider to be your best result in working with the person you assist?

_____________________________________________________________________________________

84

18. Have you received some new experiences or knowledge from the person you assist?

a. NO

b. YES (Please describe in brief what you have learned!)

_____________________________________________________________________________________

19. Do you believe that your engagement and other available forms of support satisfy most of the needs of the person you assist?

a. YES

b. NO

If your answer was “NO”, please estimate how many additional hours of support are needed in your view to ensure the independent living in the community of the person you assist, and for which type of activity do you think that person needs additional support of another person(s)?

_____________ hours of support for the following activities: ______________________________________

20. Which changes would you suggest to improve the working conditions of personal assistants?

_____________________________________________________________________________________

21. Would you recommend the job of personal assistant to a person close to you?

a. YES (Please explain your answer in brief!)

__________________________________________________________________________________

b. NO (Please explain your answer in brief!)

__________________________________________________________________________________

If you have any additional questions, complaints, or suggestions, please outline them here!

*A THANK YOU NOTE

Appendix 3

85

Appendix 4

Guide through semi-structured interviews with project leaders in associations and other project stakeholders

I. Introduction:

- Remind respondents of the project goals (depending on how acquainted that person is with the pro-ject)

- Present the evaluation goals, and note that statements will be included in the text on an anonymous basis, with the name of the person listed in the list of interviewed persons

- Role in the pilot project: What was your role in the Personal Assistant Pilot Project? Were you included in some other project with similar goals prior to this one? (independent living, some other) (For persons who were not included in the Project: How acquainted are you with the Personal Assistant Pilot Project?)

II. General assessment of the project:

- Key accomplishments (Ask for specific examples)

- Key difficulties in implementation (How did you resolve them? With whose assistance?)

III. Evaluation of individual elements of the project:

- Competition process (application, criteria for the selection of users and personal assistants)

- Implementation (training, administration, monitoring, communication with CUAPD and MOFVIS)

IV. Proposals to introduce personal assistance into the system (responsible institutions, estimate of the total number of users – for the association, county, the Republic of Croatia)

V. Concluding remarks: Thank the person, check if answers need to be amended in case anything is missing

Appendix 4

86

Appendix V

List of interviewed persons

(All interviews were conducted either by telephone or in person between August 26 and September 22, 2008)

1. Marija Crnjak, leader of “Bubamara” project, Asso-ciation of Disabled Persons Vinkovci

2. Janko Ehrlich Zdvořák, personal assistant user and project leader, Spinal injuries Zagreb, mem-ber of the expert working group for evaluating submitted projects and users

3. Nenad Gaćina, user and project leader, Associa-tion of Persons with Spinal Injuries of Splitsko-dalmatinska County (earlier CAPTPC, section of Splitsko-dalmatinska county)

4. Martina Grubiša, personal assistant to Vesna Šku-lić (not directly involved in the pilot project)

5. Ines Joković Oreb, Education-Rehabilitation Fa-culty of the University of Zagreb, member of the expert working group for evaluating submitted projects and users

6. Manda Knežević, president of the Croatian Asso-ciation of Paraplegic and Tetraplegic Persons of Croatia (CAPTPC), project leader, member of expert working group for evaluating submitted projects and users

7. Marija Kraljić, project leader and secretary of the Association of Persons with Physical Disability of the City of Rijeka

8. Jadranka Kufrin, project leader and secretary of the Association of Disabled Persons of Samobor and Sveta Nedelja

9. Antonela Markotić, project leader, Association of Persons with Disability “PRIJATELJ”, Metković

10. Marica Mirić, Personal Assistant Project coordi-nator at CUAPD, member of the expert working group for the implementation of the measure,

president of the Association of Persons with Dystrophy Zagreb and project leader for personal assistance, external member of the parliamentary Committee for Labour and Social Partnership, re-presenting civil society organisations

11. Marijan Mumlek, project leader, Association of Persons with Dystrophy, Cerebral and Child Paral-ysis and Other Disabilities of the City of Varaždin

12. Đurđica Nižić, project leader and secretary of the Multiple Sclerosis Association of Zadarska County

13. Nada Pišonić, project leader and secretary of the Multiple Sclerosis Association of Brodsko-posav-ska County

14. Petar Rajtić, personal assistance user and project leader, Association of Persons with Physical Disa-bility, Pula

15. Goran Razum, project leader, Association of Per-sons with Dystrophy of the City of Osijek

16. Anka Slonjšak, Ombudsperson for persons with disabilities, user of personal assistance and pro-ject leader in the association Spinal Injuries Zagreb (2006 and 2007, upon her appointment as om-budsperson, Janko Ehrlich Zdvořák became the project leader), member of the expert working group for the implementation of the measure

17. Josip Šimičić, personal assistance user, mem-ber of the expert working groups for the im-plementation of the measure and for the eva-luation of the applied projects and users

18. Vesna Škulić, member of parliament (SDP) (not directly included in the pilot project)

19. Anita Špalj, project leader, Multiple Sclerosis Association of Ličko-senjska county

20. Anđelka Zelenko, personal assistant user and project leader, Association of Persons with Di-sabilities Slatina

Appendix 5

87

88 United Nations Development Programme (UNDP)

Resident representative office in Croatia

Radnička cesta 41

10 000 Zagreb

E-mail: [email protected]

www.undp.hr

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