Summary

Personal assistance is a service designed to support people with disabilities in their daily lives, such as getting dressed, cooking, cleaning, leisure time activities, at their place of work and so forth. A vital element of personal assistance is that those persons with disabilities are in a position to appoint their assistants themselves instead of being dependent on help from other services or relatives and friends. Furthermore the persons with disabilities decide on what, when and how their assistants should help them. Persons receiving personal assistance, are called “users” (in German: Auftraggeber/innen).

Personal assistance has its “ideological” background in the Independent Living Movement which originated in the United States in the 1960s and 1970s. The main goals of this movement are to provide people with disabilities independence, self-determination and full participation in daily life. At the beginning of the 1980’s the movement spread to Europe. The first user co-operative (STIL) was founded in 1984 in Sweden.

Since 2001 only the Personal Assistance GmbH has been providing personal assistance in Upper Austria. The owner of this co-operative is the so-called SLI OÖ (Self-determined Living Initiative Upper Austria), which was founded in 1998. In Upper Austria, there is no legal right to personal assistance, however the Social Department of Upper Austria grants a number of assistance hours,^¹ which are received by the users and administrated by the Personal Assistance GmbH. Currently the co-operative employs about 260 assistants. They support about 150 users – mainly physically disabled people (see Chapter 1).

The aim of this study is an evaluation of personal assistance in Upper Austria, including an analysis of existing development potentials and opportunities for improvement. In accordance with the theoretical approach of disabilities studies (see Chapter 1.1), a working group was set up to accompany the study. The working group consists of users, assistants, members of the SLI, the management of the Personal Assistance GmbH, a representative of the Social Department of the Upper Austria Government, and the research group (University of Linz/ P und P SocialResearch). The 15 members of the working group have been actively involved in all research steps, something which proved to be extremely helpful in various phases of the project. In order to conduct the study, a multi-methods approach was used consisting of a postal questionnaire, qualitative interviews and an excursion to Sweden. The standardized postal survey took place during the period from May to September 2007. The questionnaire was sent to all active^² assistants and users (older than 16). 63% of the assistants (n=146) and 62% of the users (n=83) answered the questionnaire. The qualitative interviews with experts were conducted with representatives of the Social Department of Upper Austria, the SLI and the management of the Personal Assistance GmbH. The excursion to Sweden took place in August 2007. It included most members of the working group. In Sweden various organisations providing personal assistance could be visited, including the disability ombudsman of the City of Stockholm and the assistants’ trade union (see Chapter 2).

The assistants are on average 38 years old. The overwhelming majority (92%) are female. 42% have - in addition to the assistance working hours – a further employment, 26% are in training or education. The main reasons why people chose to become assistants were social responsibility, social flexibility, additional income and compatibility with the family (see Chapter 3.1).

The users are on average 39 years old and slightly more than two-thirds are women. Some 30% live alone or in the family home or in a partnership. 22% are employed. 96% receive disability allowance,^³ level 4 or 5. Approximately 50% of the users have consistent impairments, the other half has progressing impairments, which arises special charges. The main reasons to apply for personal assistance are self-determination and the discharge/ independence from the family. For 43% of the users, the personal assistance helps to avoid living in institutions for disabled (see Chapter 3.1.8).

The assistants consider the following expectations to be very important: Full respect in the assistant/ user relationship (very important + important = 89%), a good relationship between the assistants and users (80%), acceptance of personal limits (80%), correct billings by Personal Assistance GmbH (72%), secure employment (61%), maintaining one’s own privacy (57%) and positive conflict management in the assistant/ user relationship (55%) (see Chapter 3.2).

What are the expectations of the users? As very important are considered: Good relationship between the assistants and users (86%), users appoint the assistants themselves (77%), full respect in the assistant/ user relationship (76%), correct billings by Personal Assistance GmbH (75%), short waiting time to allocate personal assistance (68%), acceptance of personal limits (63%), accessibility of the assistants for users (61%), recruitment of assistants by the Personal Assistance GmbH (61%), maintaining one’s own privacy (61%) and the assistants’ empathy (58%) (see Chapter 3.2). In general, the idea of personal assistance is seen in a very positive light.

The assistants support on average 1.3 users. The working hours are 35 hours per month. The range varies considerably. The assistants earn on average a monthly income of around € 530.- . When permanently employed, assistants earn € 9.3 per working hour. Persons with temporary employment contracts earn € 17.8 per working hour. A minimum of 4% of assistants are permanently employed at the Personal Assistance GmbH (see Chapter 3.3).

On average the users are supported by 2.2 assistants. The users receive personal assistance for 66 hours per month, with a wide range from 10 hours to 250 hours. In addition to personal assistance, 78% of the users are supported by other services or relatives. The users of personal assistance have to pay €4.64 per hour to the Personal Assistance GmbH (see Chapter 3.3).

People with disability need personal assistance for their activities in everyday life. 34 singular activities were asked for in the questionnaire. They can be summarized into five categories: emotional support (see Chapter 3.4.3), personal care, domestic work, leisure time activities/ mobility and office work. The focus lies on emotional support, personal care and domestic work. Personal assistance during leisure time activities is considered less important than expected. This could be due to financial reasons (see Chapter 3.4).

In general, many assistants and users are satisfied with personal assistance. The reported satisfaction level gives an average picture, in which - as in other surveys – a majority of the interviewed people are satisfied. Despite this, there were other areas identified as less satisfactory. Assistants are less satisfied concerning the cooperation with collegues, employment legislation, the career opportunities and the high profile of personal assistance in society (see Chapter 3.5.2).

Users are also less satisfied with the training offered by the Personal Assistance GmbH and the reputation of the personal assistance in society (see Chapter 3.5.3).

Deficits were also shown in the comparison of assistants’ and users’ expectations and their realization. In addition, questions concerning the amount of stress and restrictions for assistants and users are part of the survey. Assistants are very stressed by the personal situation of disabled persons (12% very stressful), the time pressure (also 12%), short-term cancellations (10%) and heavy physical work (10%) (see Chapter 3.5.1).

Users find a change of their assistants (21% very stressful), lack of replacement when assistants are sick or on holidays (18%), time pressure (12%), lack of accessibility of assistants (11%) and short-term cancellations (14%) to be very stressful (see Chapter 3.5.2).

The approval for the assistants’ work is perceived differently. Users reported acknowledging their assistants’ work almost twice as often as was perceived by the assistants themselves. Either this approval was not given or did not appear to be given. In correlation with these findings assistants frequently provide emotional support to their users (see Chapter 3.6.1 and Chapter 3.4).

Furthermore, the profile of personal assistance in society is judged differently by the two groups. Users are more satisfied than assistants, though both groups are dissatisfied with the social acceptance of personal assistance (see above).

Some 22% of the assistants and 63% of the users reported experiencing a change in users/ assistants. The most common reasons for changing assistants were conflicts in the assistant/ user relationship, followed by changes in the life style of the assistants. Such changes can be supervised by the Personal Assistance GmbH. In many cases, this supervision is seen in a positive light. Out of all the users and assistants approximately 25 % were not satisfied (see Chapter 3.7).

The most important expectations in the relationship between assistants and their employer (Personal Assistance GmbH) are: correct billings, secure working conditions and clear job descriptions. Of minor importance are networking opportunities, supervision, and vacation and sick leave replacements. Obviously assistants and clients have to organise themselves their holiday and sick leave replacements. The fact is that this is not always successful, shown by the reported lack of holiday and sick leave replacements as a burden and latent conflict (see Chapter 3.8).

This is similar to the users. Their most important expectations from the Personal Assistance GmbH are: Correct billings, short waiting time to allocate personal assistance and recruitment of assistants by the Personal Assistance GmbH (see Chapter 3.8).

Focusing on further trainings offered by the Personal Assistance GmbH, users are interested in courses concerning the legal framework of personal assistance, their own personal development, trainings dealing with conflict situations and personal care (see Chapter 3.9.2). The assistants are interested in courses focusing on their own personal development, dealing with conflict situations and therapeutic pedagogy. Assistants are also very interested in an expansion of the basic assistants’ training (see Chapter 3.9.1).

Finally the survey asked whether there was a demand for medical and therapeutic treatments, which assistants are currently not allowed to carry out. Approximately 13% of the users reported a need for therapeutic treatment, 11% of the assistants reported a need for treatment with medication (see Chapter 3.9.3).

The experts refer to the development of personal assistance in Upper Austria. The initiative SLI Upper Austria and the co-operative Personal Assistance GmbH have different tasks (see Chapter 4.1).

The experts point out the advantages and disadvantages of assistants´ temporary employment. These working contracts provide higher flexibility for the assistants and more independence for the users. On the other hand these contracts are viewed negatively by the workers’ council (see Chapter 4.4).

The existing training opportunities for assistants and users are considered to be advantageous although there is a lack of regional supply in courses and trainings. For many persons it is difficult to participate in the courses at the office of Personal Assistance GmbH in Linz (see Chapter 4.5).

The assistance by close relatives will be seen negatively because of the resulting dependence.

The experts report a demand for medical and therapeutic activities. The current restrictions on these additional activities will be considered as given. However, some experts do not understand, because family members are of course permitted to perform such very tasks (see Chapter 4.6).

A competitive situation between assistance providers is considered positively. The workers’ council does not agree with this point of view (see Chapter 4.6).

In Sweden people with extensive disabilities have a legal right for personal assistance. Persons with basic needs for more than 20 hours a week are entitled to personal assistance. Persons with less than 20 hours are supported by the home help service of Swedish communities. It must be seen, that the framework of personal assistance differs significantly between Sweden and Austria (see Chapter 5.3).

In addition, personal assistance to people with mental disabilities is self-evident. However, problems could arise when assisting persons with psychic disabilities or with addictive diseases.

Personal assistance is provided by different organizations: Communities, co-operatives, companies and other organizations.

A large number of the assistants are female. In some Swedish organisations, the percentage is not as high as in Upper Austria.

The profile of the assistants in society is considered to be low. This might be explained by the lack of qualifications.

With approximately 70,000 employees, the personal assistance is an important sector of employment.

To replace holidays and illness vacancies, some organisations offer a "Springer" ("Servicegaranter", "Contact", etc.), who takes over the assistant.

The comparison with Sweden shows that the development potential is by far not yet fully exploited. Based on 100,000 residents, 159 persons in Sweden receive personal assistance, in Upper Austria, these are eleven people. In Sweden users receive on average 103 hours assistance per week, in Upper Austria are 15.3 hours a week. In Sweden, about 70,000 people are employed as personal assistants, in Upper Austria currently about 260 assistants are employed. The differences are caused by different legal situations. In Sweden people with extensive disabilities have a legal right to personal assistance and there is no ceiling for the amount of assistance hours. In contrary to Sweden, Upper Austrian users have to pay € 4.64 per hour and there is a ceiling of 250 assistance hours per month.

However, there is a preferable expansion of personal assistance in Austria. Therefore a ceiling for the users’ payment should be adopted. In addition to the Personal Assistance GmbH, personal assistance should be provided by other organisations in order to employ many more assistants. This could also promote competition. It is, however, important to ensure that this expansion does not influence the quality of assistance.

Extending assistance to people with learning disabilities (mental impairment) is imaginable. However there is a need for a more specific training and a thorough preparation in order to realize the ideas of self-determined life.

A particular challenge are progressive diseases - they have special charges, and a growing need for assistance, which has not always been taken into account.

Social insurance and payment for assisting relatives should be discussed. However, close relatives should not be regarded as personal assistants. Dependencies could arise or be strengthened.

Within the assistant/ user relationship aspects of personal boundaries - both in terms of the private sphere and the availability of assistants – should be considered. In particular, it is not easy for younger assistants to protect personal limits.

Regulations regarding sick leave and vacation are very important. There should be a representative system, for example "Springer System” similar to that in Sweden.

Education and training for assistants and users would be very helpful. There is widespread interest. Courses could deal with the questions of gender roles, protecting of personal limits and social recognition.

Mag.^a Silvia Földes (Mitarbeiterin Persönliche Assistenz GmbH) Moosbrugger Brigitte (Interessensvertretung

Gerald Gründling (Betriebsrat, Assistent) der Auftraggeber/innen, Auftraggeberin)

Mag.^a Renate Hackl (Sozialabteilung, Land Oberösterreich) Pauly Britta (Assistenzbegleitung)

Mag.^a Karin Kaufmann (SLI-Vorstand, Auftraggeberin) Mag.^a Pilz Monika (Assistentin)

1 96.000 hours in the year 2007.

2 Active at 31.3.2007 (Stichtag).

3 So-called „Pflegegeld“, granted from state to persons with impairments, paid on seven levels (level 1 = €148.30 to level 7 = €1562.10 monthly).