Quality of Life and Costs of Living and Services of

Quality of Life and Costs of Living and Services of Disabled People in Various Residential Arrangements in Hungary

Extended summary of the final study related to the project „VP/2013/013/0057 New dimension in social protection towards community based living”

TÁRKI Social Research Institute, Budapest Budapest, 2016

The summary was written by

Ágnes Kozma

Project manager: Principal investigator:

Anikó Bernát Marianna Kopasz

Survey expert:

Bori Simonovits

Reaearch team: Marianna Kopasz Bori Simonovits Ágnes Kozma Anikó Bernát Tamás Verdes Zsolt Bugarszki

TÁRKI Társadalomkutatási Intézet Zrt. 1112 Budapest, Budaörsi út 45. Tel.: 309-7676 Fax: 309-7666 Web: www.tarki.hu E-mail: [email protected]

TABLE OF CONTENT

1.

Background ...........................................................................................................................................4

2.

Research questions ...............................................................................................................................4

3.

2.1

Measuring quality of life ...............................................................................................................4

2.2

Cost measurement........................................................................................................................6

Research methods ................................................................................................................................7 3.1

Research design ............................................................................................................................7

3.2

Target groups and Participants .....................................................................................................7

3.3

Data collection instruments..........................................................................................................8

3.4

Recruitment of participants ........................................................................................................10

4.

Analysis ...............................................................................................................................................11

5.

Results.................................................................................................................................................12 5.1

Quality of life of People with intellectual disabilities .................................................................12

5.2

Quality of Life of People with profound intellectual and multiple disabilities ...........................14

5.3

Quality of Life Of People with autism .........................................................................................15

5.4

Quality of Life oF People with psychosocial disabilities .............................................................16

5.5

Costs of care................................................................................................................................19

5.6

Limitations ..................................................................................................................................22

References ..............................................................................................................................................23 Appendix: Questionnaires ..........................................................................................................................24

1. BACKGROUND

This reports provides a summary of the methods and findings of the project “New dimensions in social protection towards community based living” (VP/2013/013/0057). The research was carried out by TARKI Social Research Institute and funded by the Equal Opportunities of Persons with Disabilities Non-profit Ltd. (Fogyatékos Személyek Esélyegyenlőségéért Közhasznú Nonprofit Kft.; FSZK) together with Hand in Hand Foundation (Kézenfogva Alapítvány) in Hungary in 2015-2016.

2. RESEARCH QUESTIONS

The study had two closely related objectives: on the one hand it aimed to examine and compare the quality of life of adults with disabilities living in residential institutions, smaller group homes and private households (either with their family or independently). On the other hand it set out to analyse the costefficiency of these residential arrangements in terms of social care provision. The analysis covers those in residential settings – institutions and supported accommodation (i.e. group home) services – included in current deinstitutionalisation policies in Hungary. The study included four groups: (1) adults with intellectual disabilities, (2) adults with autism, (3) adults with profound intellectual and multiple disabilities, and (4) adults with psychosocial disabilities.

2.1 MEASURING QUALITY OF LIFE In 2002, a group of researchers from the International Association of the Scientific Study of Intellectual Disabilities (IASSID) published a consensus document (Schalock et al. 2002) that forms the basis for research on quality of life. In line with this, quality of life is conceived in this study as a multidimensional concept that consists of eight domains: (1) personal development, (2) self-determination, (3) interpersonal relations, (4) social inclusion, (5) rights, (6) emotional well-being, (7) physical well-being, and (8) material well-being, as developed by Schalock et al. (2002) (see Table 1). These domains have been validated in a series of cross-cultural studies (e.g. Schalock et al. 2005). This approach to measuring quality of life includes subjective and objective measures.

4

Table 1 Quality of life conceptual model: factors, domains, and indicators Factor Independence

Social participation

Domain

Exemplary indicators

Personal development

Education status, personal skills, adaptive behaviour (ADLs & IADs)

Self-determination

Choices/decisions, autonomy, personal control, personal goals

Interpersonal relations

Social networks, friendships, social activities, interactions, relationships

Social inclusion

Community integration/participation, community roles, supports

Rights

Human (respect, dignity, equality) Legal (legal access, due process)

Well-being

Emotional well-being

Safety & security, positive experiences, contentment, selfconcept, lack of stress

Physical well-being

Health & nutrition status, recreation, Leisure

Material well-being

Financial status, employment status, housing status, possessions

Source: Schalock, Bonham & Verdugo 2008:182

In the initial phases of the study, we reviewed different quality of life questionnaires for people with disabilities developed and used in other countries1. They all have in common that they are based on the internationally accepted conceptualisation of quality of life (QoL) and cover all eight domains (Schalock et al. 2002). However, we could not identify a single instrument that met the requirements of our study and could have been readily adapted to the Hungarian context. Therefore, relying on these existing instruments, we developed our own research instruments that met the expectations of the Funders and were feasible within the budget available. That is, the methodology was shaped by previous research as well as the local context.

1

These were: (1) Ask Me!, (2) INICO-FEAPS Scale: Comprehensive Quality of Life Assessment of People with Intellectual and Development Disabilities, (3) Personal Outcomes Scale (van Loon et al. 2009).

5

2.2 COST MEASUREMENT The research also aimed to examine the costs of care for the four target groups in the three different residential arrangements: large institutions, group homes, and private households. As was noted above, it is uncommon in the literature to make cost comparisons between institutional/community settings and private households. Furthermore, little research has been conducted to examine the costs of support for people with intellectual disability in private households. Research findings from cost studies generally refer to childhood (and not to adulthood) and compare families bringing up children with intellectual disability to those bringing up children without disabilities. In Hungary, finding the data for cost measurement was challenging and resource-intensive. Data needed to be collected specifically for the purposes of this research from residential service providers (see the “Questionnaires” in the Appendix). In addition, another challenge was to make the cost categories directly comparable between institutional/community settings and private households. Among others we faced the following problems: -

-

-

While identifying the costs of care is relatively straightforward in the case of residential services (i.e. staff salaries etc.), it is less so for private households where the cost of care/support is hidden. Therefore the cost of care in private households needed to be estimated as the foregone earnings of the main carer who left the labour market to look after the individual with disabilities. Identifying and measuring the costs of service provision (i.e. services other than care) is also problematic. There are fundamental differences between the three residential arrangements in the structure and organisation of services (e.g. therapies, support services, etc.). While institutions tend to provide services in-house, group homes use a mixture of in-house and external provision, and families use only external services. Considering the large number of external service providers, it was not possible to collect information on the costs of services provided by external providers within the framework of this research. Thus, the costs calculated do not include costs for services other than care for any of the residential arrangements. Capital costs for buildings (and durable equipment) should also be taken into account in the cost estimates. However, they are often not included in the cost-comparison studies (Walsh et al 2003). Although we attempted to collect information from respondents (i.e. managers in case of institutional/community settings and heads of households in case of private households) on the market value of the property or the rent paid for it, there was a high rate of missing answers for these questions. Estimating the market value of properties was not possible for this research since both residential service providers and households were recruited throughout the country. Thus, capital costs could not be included in this study.

6

3. RESEARCH METHODS

The methodology was shaped by previous research as well as the local context in Hungary. It required extensive preparation because there were no existing studies or protocols in Hungary or elsewhere that could have been readily adapted to the current study. Therefore, we used existing quality of life measures and adapted them to the Hungarian situation, and we also developed our own research instruments that met the expectations of the Funder and were feasible within the budget available. This section gives an overview of the main phases of the research as well as the key methodological components, highlighting some of the challenges encountered and ways of addressing them.

3.1 RESEARCH DESIGN The study started in March 2015, the research methodology and data collection instruments were developed in March and April. These were then reviewed by people with disabilities, family and paid carers as well as social care professionals and they were also piloted extensively with people with disabilities in different residential settings between April and June. The recruitment of participants also started during this phase. Data collection started in July and ran until December, 2015. The research focuses on four groups of people with disabilities identified by the Funder, namely adults with intellectual disabilities, autism, profound intellectual and multiple disabilities, and psychosocial disabilities. The four groups were examined in three main residential arrangements: large residential institutions, smaller scale group homes, and private households (including those living with their families or independently). Due to the low number of people in supported accommodation settings (in Hungarian: támogatott lakhatás), their quality of life was examined separately in a case study using qualitative interviews with service users, staff and professionals. Because the aim of the research was to examine the quality of life outcomes and cost-effectiveness across different residential arrangements, we used non-representative sampling and a matched samples design to eliminate bias arising from the different case mix in the different residential arrangements.

3.2 TARGET GROUPS AND PARTICIPANTS To be included in the study individuals must have an official diagnosis. Participants were allocated to one of the four groups based on their primary disability, and in the case of people with profound intellectual and multiple disabilities the presence of an additional disability in addition to a diagnosis of profound/severe intellectual disability. The intended composition of the sample is shown in Table 2.

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Table 2 Intended composition of the sample Intellectual disabilities

Autism

Profound intellectual and multiple disabilities

Psychosocial disability

Total

Institution

40

40

40

40

160

Group home

40

40

40

40

160

Private household

40

40

40

40

160

Total

120

120

120

120

480

The study covers four very heterogeneous groups of participants. This raises important methodological challenges that can potentially undermine the internal validity of the comparative analysis. Internal heterogeneity was particularly an issue for people with autism and those with psychosocial disabilities, and it was addressed by narrowing the inclusion criteria. For people with autism, those with highfunctioning autism (or Asperger Syndrome) found predominantly in private households were excluded on the basis of advice from professionals and to maintain comparability with those living in group home settings who tend to have more severe autism. People with psychosocial disabilities are an even more heterogeneous group, therefore – on the basis of consultations with professionals and the Funder – this group was narrowed down to people with schizophrenia and those with any other diagnosis (e.g. depression etc.) were excluded from the study. People with schizophrenia make up the largest group of people living in long-stay mental health institutions and also relatively large numbers live in the community either independently or with their family. Therefore, it is important to keep in mind that any findings reported in this study on people with psychosocial disabilities apply exclusively to people with schizophrenia. Some service providers operate both institutions and group homes. As a general rule these were excluded from the study to make sure that costs could be clearly attributed to a particular residential arrangement and avoid any bias arising from cross-financing of services. However, this rule could not be applied to services for people with psychosocial disabilities because at present all group homes are operated by large institutions.

3.3 DATA COLLECTION INSTRUMENTS Data on each individual was collected using three questionnaires2:  

2

A self-report “client questionnaire” that asks about the respondent’s subjective well-being in eight quality of life domains and some basic socio-demografic characteristics and personal opinion; A “carer questionnaire” that can be answered by a carer (paid or unpaid/family carer) who knows the client and their everyday life well. This questionnaire provides information on the living

The Hungarian version of the questionnaires can be obtained from TÁRKI Social Research Institute.

8



conditions, infrastructure and some aspects of objective quality of life of the individual and it repeats the questions on quality of life from the “client questionnaire”; A “manager/head of household questionnaire” that can be answered by someone who is familiar with the financial situation – budget, income, spending etc. – of the setting where the participant lives (i.e. institution, group home, or private household).

The development of questionnaires lasted approximately four months and included extensive piloting with people with disabilities, service providers and family carers. The main challenge was to create questionnaires that are relevant and adequate for all four participant groups in very different residential arrangements. The aim to include the views of people with disabilities themselves directly in the study had implications for the design of the “client questionnaire”, particularly the number of questions, the amount of time required to complete the questionnaire, and the wording of the items. Some of the instruments reviewed had up to nine questions per domain. The original version of the Hungarian client questionnaire consisted of 48 items, eight items per domain selected on the basis of their face validity by the research team. There were major differences between the instruments reviewed in terms of the use of response scales. Some questionnaires had the same response scale for each item (e.g. INICO-FEAPS), while others used different response scales (e.g. POS). Some questionnaires use Likert-type response scales (i.e. responses range from “totally agree” to “totally disagree”), others use frequency scales (i.e. where the extremes are “always” and “never”). The selection of response scale has implications for the use of the questionnaire – whether responses for each item can be added together and used as an index/summary rating. Our original response scale was a four-level frequency scale. The inclusion of pre-screening is sometimes recommended in self-report questionnaires for people with intellectual disabilities (Emerson et al. 2013). However, this was not feasible in this study – due to data collection arrangements – nevertheless a practice item was incorporated into the questionnaire that provided participants the opportunity to practice the use of the response scale before answering the QoL questions and highlighted any major difficulties in responding that the interviewer could note on the questionnaire. The carer and manager/head of household questionnaires were developed alongside the client questionnaire. They were based on input from service providers (e.g. funding sources, availability of information on expenditures etc.) as well as existing instruments on household expenditures/costs. All three instruments were piloted with the target group and revised on the basis of feedback. The first version of the client questionnaire was piloted with seven individuals from the four participant groups in different residential settings, including private households. Based on feedback, the number of QoL questions was drastically reduced from 48 to 16. The questions that we retained were selected on the basis of ease of use by the target group and face validity. The four-item response scale was replaced by a simple three-level scale (yes, no, so-so). The revised instrument was tested again with two individuals with intellectual disabilities living in an institution. Following feedback, the wording of the questionnaire was further simplified. The third and final version was tested again in all three residential arrangements with five individuals. Client and carer questionnaires were administered face-to-face by professional interviewers from TÁRKI. All interviewers had to take part in a training session where the instruments were presented as well as some information on the target groups, particularly issues around communication and the interview 9

situation. During the interview, participants with disabilities were given the opportunity to ask someone they know well and trust to be present and where necessary facilitate communication. For people with profound intellectual and multiple disabilities who cannot respond to a self-report questionnaire, a carer who knows them well (the same person who responded to the carer questionnaire) provided proxy responses. 3.4 RECRUITMENT OF PARTICIPANTS Given that there is no comprehensive database of people with disabilities that could have been used as the sampling frame of the study, participants were identified and recruited through various channels and using a range of methods. The study had the endorsement of government agencies (e.g. Ministry of Human Resources, Directorate for Child Protection and Social Care) that provided letters of support to facilitate recruitment. The sample of eligible residential institutions and group homes (see Section 2.2 on Sampling) was drawn up using stratified sampling, taking into account the location and the client profile of the institution (i.e. types of service users catered for). From this list, services were selected randomly and asked to take part in the study. A total of 22 institutions and 49 group homes were invited to take part in the study, out of which 19 institutionsa and 35 group homes agreed to be involved in the research. Once consent from management was obtained, services were contacted to find out about the distribution of service users by type and severity of disability to help planning individual sampling and they also received the management questionnaire electronically. When the management questionnaire was returned – this sometimes took a long time and reminders had to be sent – services were contacted to recruit individual participants (service users and carers) and arrange site visits. Originally, the intention was to examine all four participant groups in all three residential arrangements; however it was not possible to identify a sufficient number of people with a formal diagnosis of autism in institutions. This was not entirely unexpected; Turnpenny (2011) found no service user with a diagnosis of autism in a random sample of 60 people living in institutions. Autism is a relatively new diagnostic category in Hungary – introduced in 2003 – and thus more common among children and young people. Although there are adults with autism living in institutions, the majority of them remain undiagnosed (Petri & Vályi 2009). Another difficulty during recruitment arose from the fact that the distribution of the four participant groups differs across the three residential arrangements. It has already been been highlighted that the number of people with a diagnosis of autism is very low in institutions, thus – despite our best efforts – we could not recruit enough participants from this type of setting and it had to be excluded from the analysis. (i.e. people with autism in institutions). Another challenge was to identify and recruit older age groups living in private households in all four participant groups, as well as younger participants (aged under 30 years) in mental health institutions. The recruitment of those living in private households was especially challenging and resource-intensive. Day service providers and advocacy organisations were asked (e.g. ÉFOÉSZ, AOSZ) to circulate a call for participants in their networks. Potential participants from waiting lists of participating service providers were also contacted. Overall, the recruitment of participants in private households lasted until November 2015. In total 473 families indicated their willingness to take part in the study, out of whom 293 met the 10

inclusion criteria. People with psychosocial disabilities were recruited exclusively via day service providers. Participation in the study was voluntary and anonymous.

4. ANALYSIS

Data on quality of life and costs were analysed by participant group. In accordance with the original study design, matched sub-samples were used. In three participant groups sub-samples were matched on the basis of adaptive behaviour (i.e. the collection of practical and social skills used in everyday life) that is considered a key determinant of quality of life for people with intellectual disabilities (Mansell 1996). The intellectual disabilities and autism sub-samples were matched case by case, while the profound intellectual and multiple disabilities sub-samples were matched on the basis of average scores on the adaptive behaviour item list. The sub-samples of people with psychosocial disabilities were matched on the basis of average age. Table 3 indicates the total number of participants in the final sample. Table 3 Composition of the achieved sample Intellectual disabilities

Autism

Profound intellectual and multiple disabilities

Psychosocial disability

Total

112

138

462

prior to matching total

130

82 after matching

Institution

33

-

31

35

99

Group home

33

30

31

35

130

Private household

33

30

31

35

130

Total

99

60

93

105

359

Adaptive behaviour was measured using a simple list of nine items related to everyday skills (such as using the toilet, getting dressed, getting out and about etc.), and for each item carers were asked to indicate whether the participant was independent or needed any help. A combined quality of life score was created from the answers for the 16-item quality of life questionnaire. To create the combined score, positive answers were recorded as 1 and negative or “inbetween” answers were recorded as zero. Scores were then added to obtain the combined score, therefore its value ranges between 16 and 0, higher scores representing better quality of life. Considering the extremely limited timeframe of the study, it was not possible to validate and examine the psychometric properties of the combined score. As a general rule, we used information reported by people with disabilities for the 16-item quality of life questionnaire and the combined quality of life score. Where this was not possible due to non-response, the missing answer was filled in with a response from the carer questionnaire. This did not exceed 10% for the majority of items for people with intellectual disabilities and 25% for people with autism, however 11

it was considerably higher for people with profound intellectual and multiple disabilities. Substituting missing answers was not necessary for people with psychosocial disabilities who could self-report quality of life information. Other information (i.e. on medication, illnesses, number of people sharing facilities etc.) was gained from proxy respondents (i.e. carers).

5. RESULTS

This section gives a brief overview of the main findings on quality of life by participant group, followed by a summary of findings on the costs of care. 5.1 QUALITY OF LIFE OF PEOPLE WITH INTELLECTUAL DISABILITIES The main characteristics of this subsample are summarised in Table 4. This was a relatively able group of people, with the majority of them requiring no or little help in most areas of everyday life. Table 4: Distribution of the sample by residential arrangement, age group and level of adaptive behaviour (N) Age Institution

Group home

Family home

Total

Independent in up to 4 areas

Independent in 5-7 areas


total

18-39 years 40-60 years

4 5

4 7

12 0

20 12

Total 18-39 years

9 7

12 6

12 8

33 21

40-59 years

2

6

4

12

Total 18-39 years

9 5

12 8

12 7

33 20

40-59 years

4

4

5

13

Total 18-39 years

9 16

12 18

12 27

33 61

40-59 years

11

18

9

37

27

36

36

99

For people with intellectual disabilities we found significant differences between the three residential arrangements in terms of the combined quality of life score (Table 5). People living in group homes, and to a lesser extent institutions, had better quality of life scores than those living at home. Particularly, people living in residential settings scored higher than those living with family carers on two quality of life domains: rights and self-determination. Furthermore, the share of those who were in a relationship or in a co-habiting partnership was significantly higher in residential settings, while people who lived in the family had a more extensive relationship with their extended family. An obvious explanation for the observed difference in quality of life scores might be the status of adults with intellectual disabilities within the family, namely the fact that many of them are treated quasi as children and controlled by family carers. Another notable issue is the large standard deviation of combined quality of life scores and 12

the relatively large share of participants reporting very poor quality of life, especially in families: 10% of the total sample had a score of 4 or less on the combined quality of life indicator. Table 5 People with intellectual disabilities: combined quality of life score by residential arrangement and adaptive behaviour

Total

N

Mean

Standard deviation

98

10.1

3.7

Residential arrangement Institution

33

10.1

4.0

Group home

33

11.5

2.8

Family home

32

8.7

3.9

F value (sign)

5.08 (0.008)** Adaptive behaviour


27

7.1

4.3


36

10.8

2.8


36

11.5

2.9

F value (sign) 14.92 (0.000)*** * indicates correlations that are significant according to the F-test (p < 0.05) **- indicates correlations that are significant according to the F-test (p < 0.01) ***- indicates correlations that are significant according to the F-test (p < 0.001) ****- indicates correlations that are significant according to the F-test (p < 0.0001)

The above findings are qualified by the fact that in a number of other key areas people in residential settings had a clearly worse quality of life. The use of psychoactive medication should be noted as one such area where people in institutions had less favourable outcomes. They were significantly more likely to take psychoactive medication: 85% of people without a diagnosis of epilepsy or mental illness were taking such drugs in institutions compared to 46% in group homes and 31% in family homes. Overcrowding – which has implications for emotional, physical and material well-being – was more common in institutions than in group homes or family homes. One in four people with intellectual disability in institutions was sharing a room with at least three others, while 72% of those living with their family had their own room. People in residential settings were also more likely to be under any form of guardianship than those living with their family. In a number of areas (e.g. employment, friendships etc.), however, there were no significant differences in the quality of life of people with intellectual disabilities in different residential arrangements. There was no relationship between quality of life and age group or quality of life and gender.

13

5.2 QUALITY OF LIFE OF PEOPLE WITH PROFOUND INTELLECTUAL AND MULTIPLE DISABILITIES Group-level matching was used to create comparable sub-samples of people with profound intellectual and multiple disabilities. Table 6 provides an overview of the main characteristics of the sample. Table 6 Distribution of participants with profound intellectual and multiple disabilities by level of adaptive behaviour, residential arrangement, gender and age (N, mean, SD, Min, Max) Type

N

Mean

SD

Minimum

Maximum


31

2.94

2.29

0

7

Group home

31

2.81

2.44

0

7

Family home

31

2.39

2.12

0

7

Gender Male

47

2.57

2.18

0

7

Female

46

2.85

2.38

0

7

93

2.71

2.28

0

7

Age group 18-34 years

53

2.43

2.22

0

7

35-57 years

40

3.08

2.32

0

7

Total

93

2.71

2.28

0

7

In this group there was no statistically significant relationship between the combined quality of life score and residential arrangement (see Table 7). Although those living with their families had less favourable outcomes in some areas associated with physical well-being. In particular, they were less likely to do any physical activity (i.e. exercise, gardening etc.) or attend dental health checks than those living in residential care settings. Table 7 People with profound intellectual and multiple disabilities: combined quality of life score by residential arrangement and adaptive behaviour

Total

N

Mean

SD

93

8.3

3.3


31

8.9

3.0

Group home

31

7.8

3.0

Family home

31

8.2

3.9

F-test (sign)

0.832 (0.438) Adaptive behaviour


47

6.8

2.8


46

9.9

3.1

F-test (sign) 25.676 (0.000)**** * indicates correlations that are significant according to the F-test (p < 0.05) **- indicates correlations that are significant according to the F-test (p < 0.01) ***- indicates correlations that are significant according to the F-test (p < 0.001) ****- indicates correlations that are significant according to the F-test (p < 0.0001)

14

We also found significant differences between people with profound intellectual and multiple disabilities living in different residential arrangements in terms of the use of psychoactive medication and living conditions (overcrowding). The use of psychoactive drugs and overcrowding was more common in institutions. People living with their families were less likely to be under guardianship than those in residential care. In a number of areas (e.g. employment, friendships etc.) there were no significant differences in the quality of life of people with intellectual disabilities in different residential arrangements, however many people experienced poor outcomes. For example only 20% of the total sample was working, just over half had friends and only two individuals were in a relationship. There was no relationship between quality of life and age group or quality of life and gender.

5.3 QUALITY FF LIFE OF PEOPLE WITH AUTISM As it has been mentioned previously, not enough people with autism could be recruited in institutions, therefore the comparison of quality of life outcomes is limited to those living in group homes and family homes. The characteristics of the sample is summarised in Table 8. Table 8: Distribution of participants with autism by adaptive behaviour and residential setting, gender and age group (N) Independent in up to 4 areas


Total

Residential arrangement Group home

14

16

30

Family home

14

16

30

Total

28

32

60

Gender Male

19

21

40

Female

9

11

20

Total

28

32

60

Age group 18-30 years

20

15

35

31-53 years

8

17

25

Total

28

32

60

Among adults with autism there was no significant relationship between the combined quality of life score and residential arrangement. Or differently, people with autism who live in a group home and people who live at home with their family have a similar quality of life (as measured by the combined quality of life indicator) (See Table 9).

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Table 9 People with autism: combined quality of life score by residential arrangement and adaptive behaviour

Total

N

Mean

SD

60

9.22

3.66

Residential arrangement Group home

30

9.6

3.51

Family home

30

8.8

3.83

0.773 (0.383)

F-test (sign) Adaptive behaviour Independent in up to 2 areas

28

7.1

3.46


32

11.0

2.80

F-test (sign) 23.121 (0.000)**** * indicates correlations that are significant according to the F-test (p < 0.05) **- indicates correlations that are significant according to the F-test (p < 0.01) ***- indicates correlations that are significant according to the F-test (p < 0.001) ****- indicates correlations that are significant according to the F-test (p < 0.0001)

The data suggested that people with autism who live in group homes had marginally (but statistically not significant) better access to leisure activities, more intimate relationships, better knowledge of their rights and worried less. People living with their family had more relationships with people in the local community (e.g. neighbours) and in their extended family. They were also more likely to have access to the Internet.

5.4 QUALITY OF LIFE OF PEOPLE WITH PSYCHOSOCIAL DISABILITIES As it has been highlighted previously, within the group of people with psychosocial disabilities, the analysis focused on those with a diagnosis of schizophrenia and used sub-samples matched on average age across the three residential settings. Originally, the intention was to use a matched-cases design based on age at diagnosis, however due to a high number of missing answers and issues around the reliability of information, the decision was made to use age as the main variable for matching. The characteristics of the sample with psychosocial disabilities is shown in Table 10 and Table 11.

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Table 10 Distribution of people with psychosocial disabilities by residential arrangement, gender and age group (N)

Institution

Group home

Family home

Total

30-47 years

48-65 years

total

Male

12

6

18

Female

9

8

17

total

21

14

35

Male

6

11

17

Female

3

15

18

total

9

26

35

Male

18

4

22

Female

6

7

13

Total

24

11

35

Male

36

21

57

Female

18

30

48

total

54

51

105

Table 11 Average age at psychiatric diagnosis by age group and residential arrangement Res. arrangement Institution

Group home

Family home

Total

Age groups

N

Mean age

SD

30-42

9

24.5

7.5

43-55

15

27.2

7.0

56-65

10

29.9

7.5

total

34

27.3

7.4

30-42

5

22.3

2.9

43-55

13

21.6

2.9

56-65

11

28.0

6.6

total

29

21.7

7.9

30-42

17

25.1

4.5

43-55

11

24.8

8.4

56-65

4

39.3

5.7

total

32

26.8

7.7

Institution

34

27.2

7.5

Group home

29

24.0

7.3

Family home

32

26.8

7.7

total

95

26.0

7.6

In this group, those living in group homes had the best quality of life (as measured by the combined score) and those living in institutions had the worst quality of life. The quality of life of people living in a private household was comparable to those in group home settings (see Table 12).

17

Table 12 People with psychosocial disabilities: combined quality of life score by residential arrangement and age group

Total

N

Mean

SD

105

10.0

3.1


35

8.9

3.2

Group home

35

11.0

2.8

Family home

35

10.1

3.0

F-test (sign)

4.205 (0.018)* Age group

30-42 years

35

9.5

3.4

43-55 years

41

10.3

3.2

56-65 years

29

10.3

2.6

F test (sign) 0.851 (0.43) * indicates correlations that are significant according to the F-test (p < 0.05) **- indicates correlations that are significant according to the F-test (p < 0.01) ***- indicates correlations that are significant according to the F-test (p < 0.001) ****- indicates correlations that are significant according to the F-test (p < 0.0001)

People living in group homes enjoyed a relatively better quality of life in a number of areas compared to those in other settings: they had higher levels of social participation (access to leisure activities), reported more social and intimate relationships, were more aware of their rights, had more freedom to manage their own money (make decisions about how to spend their money), better physical well-being and personal-development. It is worth highlighting that living conditions were by far the worst among people with psychosocial disabilities in institutions (see Table 13). Table 13 Number of people with psychosocial disabilities sharing different facilities Setting

Mean

Median

Minimum

Maximum

N

Bedroom Institution

4.0

4

1

8

35

Group home

2.5

2

1

6

35

Family home

1.4

1

1

4

12

Total

3.0

2

1

8

82

Bathroom Institution

22.2

25

2

60

35

Group home

6.5

5

1

10

35

Family home

2.3

2

1

5

12

Total

12.6

6

1

63

82

18

5.5 COSTS OF CARE The analysis aimed to examine the costs of care for the four participant groups in the three different residential arrangements: the family home, large institutions and group homes. Thus, the challenge was to make the items of expenditures directly comparable between residential services and private households. There were a number of difficulties to this task; in particular the lengthy and complicated questionnaire should be highlighted. The analysis of costs concentrated on the following main categories: Cost of care/support While this is relatively straightforward in the case of residential services (i.e. staff salaries etc.), it is less so for private households where the cost of care is largely hidden. Therefore the cost of care/support in private households was estimated as the – subjective, self-reported – earning potential of the main carer who left the labour market to look after the individual with disabilities. However, this is affected by the carers’ perception of their opportunities on the labour market. Cost of other services Other services include therapies and support services (such as employment services). There are important differences between the three residential arrangements in the structure and organisation of other services. While institutions tend to provide these in-house, group homes use a mixture of in-house and external provision, and families use only external services. Considering the diversity of other services and providers, it was not possible to collect information on the cost of other services directly from their providers. The cost of other services was estimated by the manager/head of household. Living costs Living costs include spending on food, accommodation (e.g. utility bills etc.), property maintenance, transport and communication, as well as other costs (e.g. purchase of household products). Disability-related expenditure This relates to the added cost of disability and includes spending on specialist medication, hygiene products, equipment etc. Overhead costs This study used a narrow definition of overhead costs that includes the cost of administration and management but excludes costs directly associated with the provision of care and support (such as utility bills etc.). Thus, overhead costs only arise in residential services and not in private households. Capital costs Capital costs should also be taken into account for calculating the cost of care. However, unlike in staff salaries, there are large regional variations in the capital costs of buildings (Beecham 1995: 68) and they are seldom included in the analysis of costs (see Walsh et al 2003 for more detail). 19

The capital cost can be calculated on the basis of the current discounted market value or the rent paid for the property. The majority of institutions operate in publicly (state or local authority)-owned buildings and use them free of charge. The picture is more varied for group homes. We attempted to estimate the capital cost by asking managers/heads of households to estimate the market value of their property (institution, group home or family home), however – in accordance with our expectations – there was a high rate of missing answers for these questions. Given the scale and limitations of this study (resources and time scale) it was not feasible for the researcher team to estimate capital costs. The cost of care could be analysed in full for participants with intellectual disabilities and autism (acknowledging that we did not have an institutional sample for this group). For those with profound intellectual and multiple disabilities, the cost of care was compared between group homes and private households due to high levels of non-response in institutions. It was not possible to calculate and compare the cost of care for people with psychosocial disabilities due to a combination of factors, including the absence of independent group home provision and high rates of non-response among residential care providers on the cost questionnaire. Costs are examined primarily from a social perspective but where available, the actual costs incurred by families are also indicated for information. All costs are in Hungarian forints, the currency of Hungary. 3 For people with intellectual disabilities the least costly residential arrangement was the family home and the difference between the cost of care in institutions and group homes was not significant (Table 14). People in private households also had less favourable quality of life as measured by the combined quality of life indicator and access to services. Therefore, from a cost-efficiency point of view, improving access to services (such as therapies, employment, community facilities etc.) for those living with their families seems particularly justified. However, the cost implications of improving access to services for families must be examined separately. Table 14 Cost comparison of care for people with intellectual disabilities (HUF/person/month) Institution

Group home

Family

Living costs

49,428

79,104

53,654*

Cost of care/support (staff salary or lost potential earning)

61,189

52,602

31,863- 39,235

321

69

1,697**

Overhead (management)

6,713

18,790

n/a

Overhead (administrative and ancillary staff costs)

26,873

7,625

n/a

Total

144,525

158,190

87,214-94,586

Total cost as reported by the residential service provider

212,831

170,651

n/a

Disability-related (medication)

cost

Salary costs do not include social security contributions (these can be considered social transfers). *Includes VAT. **Includes only the cost of medication but not the cost of private health care or specialist equipment.

3

On January 18, 2016 the Hungarian forint foreign exchange reference rate against the euro was 315.42 HUF=1 EUR (http://www.ecb.europa.eu/stats/exchange/eurofxref/html/index.en.html, last accessed: 01/02/2016).

20

Private households were found to be less costly than group homes for people with profound intellectual and multiple disabilities (Table 15). Although there were no differences between the two residential arrangements concerning quality of life, but people living with their families were at a disadvantage in terms of access to services. Therefore, improving access to clinical, social and employment services seems justified for this group as well. Table 15 Cost comparison of care for people with profound intellectual and multiple disabilities (HUF/person/month) Group home

Family

Living costs

77,433

64,271*


72,822

35,333 - 60,968

511

2,974**


24,160

n/a


5,577

n/a

Total

180,503

102,578 - 128,213


203,674

n/a

Disability-related cost (medication)

Salary costs do not include social security contributions (these can be considered social transfers). *Includes VAT. **Includes only the cost of medication but not the cost of private health care or specialist equipment.

Findings were also similar for people with autism (Table 16). The comparison of costs was limited to group homes and private households because the majority of adults with a diagnosis of autism live in types of settings. The findings show that the average cost of care in private households was lower than in group homes. However, group homes offer better quality of life in some areas, such as social participation and access to services. Furthermore, those living in group homes are more likely to work than those living with their family. Overall, it appears that group homes provide a better quality of life at a higher cost. Thus, it can be argued that improving access to services and employment opportunities for those living with their families seems justified for this group as well. Table 16 Cost comparison of care for people with autism (HUF/person/month) Group home

Family

Living costs

89,400

63,825*


66,136

44,897-47,778

-**

3,301***


28,416

n/a


9,178

n/a

Total

193,130

112,023-114,904


261,943

n/a

Disability-related cost (medication)

Salary costs do not include social security contributions (these can be considered social transfers). *Includes VAT. **Only one group home reported the cost of medication, therefore this cost was not calculated for group homes. *** Includes only the cost of medication but not the cost of private health care or specialist equipment.

21

All in all, adults living with their family in private households are in the most disadvantaged position regarding access to a range of services. This finding also seems to apply for people with psychosocial disabilities. Finally, it should be highlighted that results should interpreted with caution, taking into account the above uncertainties and limitations in estimating the costs of care.

5.6 LIMITATIONS When interpreting the results the following limitations must be taken into account: Internal validity: the 16-item quality of life questionnaire was not validated. In particular, we did not examine the properties of the questionnaire in groups of people with different levels of disability (due to the very short time available for the study). It is obvious that some questions are less relevant and applicable for people with more severe intellectual disabilities (such as the use of internet, talking to friends about feelings etc.). Therefore scores on individual quality of life items and the combined quality of life scores are not comparable across participant groups. Furthermore, the questionnaire focuses on some quality of life areas that are relatively easy to measure using a questionnaire and structured interviews and disregards others, that are equally important for quality of life but require different methods to explore them (for example the quality of interpersonal relationships etc.). These might provide a different picture on the quality of life in different residential arrangements. As a general rule information reported by the participants with disabilities was used to analyse quality of life, however, the validity and reliability of self-report was not examined systematically. Although questionnaires were piloted extensively in the four participant groups, individual variations can occur in the ability to self-report, particularly among those with more severe cognitive limitations. Proxy respondents: we used different groups as proxy respondents in the different residential settings (i.e. paid carers and family carers) and we could not take into account any potential differences between their responses. In the literature it is sometimes highlighted that paid carers as proxies tend to rate quality of life higher than family carers, although others argue that this is only the case when paid carers know the individual less well (Rand & Caiels 2015). In the present study this might have been an issue among paid carers in institutions, or, to a lesser extent, in group homes. Selection bias: although the study did not aim to use a representative sample, we must take into account that institutions and group homes that agreed to take part were systematically and significantly different from those who did not want to take part in research. Similarly, it is unclear to what extent families that were recruited via parents’ associations and advocacy organisations represent “typical” families. Generalisability (external validity): on the one hand the relatively low number of participants (approximately 100 people in each participant group) and the sampling method (non-probability) do not allow the generalisability of the findings. This means that the findings cannot be compared across participant groups – even though data were collected using the same methods and instruments. Another limitation is that the findings presented in this study cannot be generalised to other groups of people with disabilities because the composition of matched samples differs (in various aspects) from the composition of the population. 22

REFERENCES Beecham, J. (1995). Collecting and estimating costs. In Knapp, M. (Ed.) (1995). The Economic Evaluation of Mental Health Care. Arena, Aldershot Emerson, E., Felce, D., & Stancliffe, R. J. (2013). Issues concerning self-report data and population-based data sets involving people with intellectual disabilities. Intellectual and developmental disabilities, 51(5), 333-348. Mansell, J. (2006). Deinstitutionalisation and community living: progress, problems and priorities. Journal of Intellectual and Developmental Disability, 31(2), 65-76. Petri, G. & Vályi, R. (2009). Autizmus – Tény – Képek. Autisták Országos Szövetsége - Jelenkutató Alapítvány. Rand, S., & Caiels, J. (2015). Using Proxies to assess Quality of Life: A Review of the Issues and Challenges. Discussion Paper 2899. QORU: Personal Social Services Research Unit, University of Kent, Canterbury Schalock, R. L., Verdugo, M. A., Jenaro, C., Wang, M., Wehmeyer, M., Jiancheng, X., & Lachapelle, Y. (2005). Cross-cultural study of quality of life indicators. American journal of mental retardation: AJMR, 110(4), 298-311. Turnpenny, A. (2011). Deinstitutionalisation and Community-based Care for Adults with Intellectual Disabilities in Hungary: Policy Change, Challenges and Outcomes. Tizard Centre, University of Kent. Unpublished PhD dissertation. Verdugo, M. A., Schalock, R. L., Keith, K. D., & Stancliffe, R. J. (2005). Quality of life and its measurement: important principles and guidelines. Journal of intellectual disability research, 49(10), 707-717. Walsh, K. K., & Kastner, T. A., & Green, R. G. (2003). Cost Comparisons of Community and Institutional Residential Settings: Historical Review of Selected Research. Mental Retardation, 41(2), 103-122.

23

APPENDIX: QUESTIONNAIRES

No.

Institution No.

New dimension in social protection towards community based living Project No. VP/2013/013/0057

„CLIENT” QUESTIONNAIRE 2015 Participation is voluntary! Town/city: ………………………………………………………………….. District (of Budapest): I hereby declare that I have administered the questionnaire according to the rules. The will handle all data I have acquired confidentially, sharing it with only research personnel to whom it pertains.

Signature of interviewer ............................................. Interviewer’s card number

START OF INTERVIEW: From ……… Hour ……… Minute, ……… Month ……… Day, 2015

24

IMPORTANT! 1. As we use the same questionnaire for all three types of setting (institution, group home, private household), please indicate in parenthesis if you had to change a specific word! 2. As questions might have to be simplified for people with intellectual disabilities, please indicate in capitals if you had change any words. 3. In the beginning of the Quality of Life Section please offer the use of answer cards! 4. Please indicate in the end whether you have used the answer cards!

PLEASE MARK THE QUOTA TABLE WITH REGARDS TO RESPONDENT QUOTA Age group

Type of disability

Self determination

Residence

1 – 18-39 years old

1 – Intellectual disability

1 – Group 1 (independent)

1 – Institution

2 – 40-59 years old

2 – Autism spectrum disorder

2 – Group 2 (partially independent)

2 – group

3 – 60 years or older

3 – Psychosocial disability (schizophrenia)

3 – Group 3 (not independent)

3 – private

home household

4 – Profound intellectual and multiple disabilities

INTRODUCTION: My name is ……………….. and I am a researcher / interviewer with TÁRKI Social Research Institute. I am a Social Worker student / ……………….. at ELTE University. OPENING REMARKS: The purpose of this conversation is to find out how you feel living in your institution / group home / private household and how you usually spend your time. As we are doing this as part of a research, we ask a great number of people the same questions. There are no right or wrong answers, we would just like to know what you think. We will not share your answers with anyone, either those living here or anywhere else. Please let me know if you want me to repeat a question or if you would like me to put it into different words. If you find it necessary, you can ask somebody (carer) on your home to help you with answering a question.

DECISION POINT: Would you like somebody to be here to help you during our conversation?

I.

1 – Yes Who?................................................................. 2 – No 9 – Cannot decide SECTION A: SOCIODEMOGRAPHICS, FAMILY, RELATIONSHIPS, RESIDENCE

1. 2.

Respondent’s gender: 1 – Male

2 – Female

When were you born? How old are you? In year 19 ............ ............

IF RESPONDENT CANNOT SAY:

years old

9 – DK/NA

X –

25

3.

Where were you born?

Country: .................................................................................... Town/city: …………………………………………………………………… District (of Budapest): 4.

9 – DK/NA X – How long have you been living in the institution/group home/private household? Since ............

5.

X –

0 1 2 3 4 9

– – – – – –

Since birth Less than one year 1-5 years 6-10 years Over 10 years DK/NA X –

Where did you live before? MORE THAN ONE ANSWER IS POSSIBLE! Yes

No

DK /N A

a. With family (parents, grandparents, adult siblings, spouse/partner, respondent’s child, more distant relative)

1

2

9

X

b. With foster parents

1

2

9

X

c. In a children’s home (state care)

1

2

9

X

d. In an institution for children with disabilities

1

2

9

X

e. In post state care (type of residence provided to those in state care until the age of 24/25)

1

2

9

X

f.

1

2

9

X

1

2

9

X

Alone in private household

g. In private household together with others (non-family, e.g. friends)

6.

6 - RA

IF INTERVIEW TAKES PLACE IN A FAMILY HOME OR RESPONDENT HAS LIVED IN A FAMILY! QUESTION NO. 5 LINE a) YES Who did you live with (who raised you) before the age of 18? MORE THAN ONE ANSWER IS POSSIBLE! Yes

No

DK /N A

a. With both parents

1

2

9

X

b. With only one parent

1

2

9

X

c. With grandparent(s)

1

2

9

X

d. With other relative(s)

1

2

9

X

e. With foster parents

1

2

9

X

1

2

9

X

1

2

9

X

f.

Other (please specify)………………………………………………………… g. Other (please specify)………………………………………………………….

26

QUESTIONS 7-9 APPLY ONLY TO RESPONDENTS WITH PSYCHOSOCIAL DISABILITIES (SCHIZOPHRENIA), QUOTA TABLE, COLUMN 2, CODE 3!

7.

IF RESPONDENT DID NOT LIVE WITH BOTH PARENTS, IN QUESTION 6 FROM b) TO g) THERE MUST BE ONE CODE 1

If you did not live with both parents, what was the reason for that? 1 2 3 4 5

– – – – –

Parents divorced One parent died Respondent does not know one or either one of his/her parents Parents gave up their right to raise respondent Other (please specify)………………………………………………….

9 – DK/NA

8.

X –

When was your psychological condition first diagnosed? At the age of ............

OR

In year ............ 99 – DK/NA

9.

X –

Have you ever been hospitalized for more than two weeks in connection with your condition within the first five years following your diagnosis? 1 – Yes

9.a. How many times? 1 2 3 4 9

– – – – –

1-2 times 3-4 times 5-6 times more than 6 times DK/NA X –

2 – No 9 – DK/NA X –

PLEASE ASK EVERYONE!

10. Are you in a relationship? 1 – Yes, married 2 – Yes, partner (cohabiting partner, girlfriend, boyfriend, fiancée, fiancé) 3 – No X –

10 a) IF HE/SHE IS IN A RELATIONSHIP QUESTION 10 CODE 1 OR 2 Do you live together? 1 – Yes

2 – No

X –

27

SECTION B: EDUCATION AND WORK

11. What is the highest degree or level of school you have completed? (FOR RESPONDENTS WITH INTELLECTUAL DISABILITIES: What school did you go to?) 0 1 2 3 4 5 6

– – – – – – –

No schooling completed Less than 8th grade 8th grade of Elementary School Trade/technical/vocational training High school graduate, diploma or the equivalent Post High School Trade/technical/vocational training Bachelor’s degree or Master’s degree

9 – DK/NA

X –

12. Have you ever attended a special education school or course? (FOR RESPONDENTS WITH INTELLECTUAL DISABILITIES OR IF RESPONDENT DOES NOT UNDERSTAND THE QUESTION: What kind of school was it? For the disabled?) 1 – Yes

12.a. What type of educational program? 1 – Elementary School 2 – Vocational training 9 – DK/NA

2 – No 9 – DK/NA

MORE THAN ONE ANSWER IS POSSIBLE!

X –

X –

13. Do you have any qualifications? (FOR RESPONDENTS WITH INTELLECTUAL DISABILITIES OR IF RESPONDENT DOES NOT UNDERSTAND THE QUESTION: Do you have a job?) 1 – Yes

13.a. What qualification? ………………………………………………………………………………... 9 – DK/NA

2 – No 9 – DK/NA

X –

X –

28

14. Have you completed any other courses? 1 – Yes

14.a. What course have you completed? ………………………………………………………………………………... 9 – DK/NA

X –

2 – No 9 – DK/NA X – 15. Do you have a job (at present)? 1 – Yes

2 – No

GO TO 16a

9 – DK/NA

X –

15a. Please tell me briefly about your job! PLEASE GIVE DETAILS!

9 – DK/NA X – 15b. How many hours do you work per day? (FOR RESPONDENTS WITH INTELLECTUAL DISABILITIES OR IF RESPONDENT DOES NOT UNDERSTAND THE QUESTION: What time do you start and finish work?) ............ hours daily OR from ........... hour

............ hour

99 – DK/NA X – 15c. How many days do you usually work per week? OR LET RESPONDENT LIST THE DAYS HE/SHE WORKS AND ADD IT UP! ............ days per week 9 – DK/NA

X –

IMPORTANT! Please assess with the next question whether the respondent is likely to be able to answer questions about quality of life. 16. a. IF RESPONDENT DOES NOT HAVE A JOB QUESTION 15 CODE 2 What do you like doing the most? How do you usually spend your time? PLEASE CHOOSE TOGETHER WITH THE RESPONDENT AN ACTIVITY HE/SHE DOES DAILY! (E.G. GARDENING, WATCHING TV, DOING CROSSWORDS, SURFING THE INTERNET, DOING HOUSEWORK) THE CHART IS TO BE FILLED OUT WITH REGARDS TO THE CHOSEN ACTIVITY! IF THERE IS NO SUCH ACTIVITY, PLEASE ASK ABOUT HIS/HER DAILY ROUTINE! 01 02 03 04 05 06 07 08 09

– – – – – – – – –

Doing voluntary work Gardening Reading Watching TV Crosswords Surfing the internet Housework Daily routine Other (please specify):……………………………………………..

99 – DK/NA

X –

29

PLEASE ASK EVERYONE! 16b. I will now ask you about your work / CHOSEN ACTIVITIY. Please answer “yes” if you agree, “no” if you don’t agree, “so-so” if you more or less agree with the following statements. Is your work / CHOSEN ACTIVITIY interesting?

(agree)

So-so (more or less)

(disagree)

n/a

D K/ N A

a. Interesting

1

2

3

4

9

X

b. Boring

1

2

3

4

9

X

c. Tiring (IF DOES NOT UNDERSTAND: hard)

1

2

3

4

9

X

d. Easy

1

2

3

4

9

X

Yes

II.

No

DECISION POINT:

IF THERE IS NOT A SINGLE ACCEPTABLE ANSWER TO QUESTIONS 16A AND 16B, THIS IS THE END OF THE INTERVIEW! (Respondent’s answers are unacceptable if you put DK/NA in every line of table 16b.) IF RESPONDENT HAS BEEN ANSWERING WITH THE HELP OF A THIRD PERSON SO FAR, AND THINGS WENT WELL, PLEASE ASK RESPONDENT IF HE/SHE WOULD LIKE THE THIRD PERSON TO CONTINUE TO HELP! Would you like somebody to (continue to) help you during our conversation? IF YOU THINK RESPONDENT DOES NEED HELP: Who might help you answer the next questions? 1 – Yes Who?................................................................. (IF THERE WAS NO HELP UNTIL NOW, OR SOMEBODY ELSE) 2 – No 9 – Cannot decide Did the person named by the respondent help him/her in answering the questions? 1 – Yes

30

2 – No

SECTION C: QUALITY OF LIFE

17. I will now ask you several questions about your everyday life. Please answer YES, NO, or SO-SO, like with the previous question. INTERVIEWER! OFFER THE USE OF ANSWER CARDS! WITH THE MARKED QUESTIONS PLEASE ASK FOR EXAMPLES AND MARK WHETHER RESPONDENT DID SO!

IF THE ANSWER IS YES OR SO-SO Please give some (specific) examples!

MARK WHETHER RESPONDENT GAVE EXAMPLES! Yes (agree)


No

N/a

DK/ NA

(disagree )

Yes

No

First I will ask you about your personal decisions. a. Can you choose what clothes to wear in the morning? b. Do you stand up for yourself or others? (e.g. do you defend yourself or others, do you stick up for what’s right)

1

2

3

8

9

1

2

3

8

9

X

1

2

X

1

2

X

Now I will ask you what activities do you partake in, who do you spend your time with. c. Do you take part in or go to social activities? (e.g. cinema, concerts, local events or city festivals) PROGRAMS WITHIN THE INSTITUTION (E.G. COOKING TOGETHER OR WATCHING FILMS) DO NOT COUNT d. Do you meet and talk with neighbors or people in your neighborhood? PEOPLE WITHIN THE INSTITUTION DO NOT COUNT!

1

2

3

8

9

1

2

3

8

9

X

1

2

3

8

9

X

1

2

3

8

9

X

I will now ask you about your relationships e. Is there someone you can turn to for advice? CARER / MENTOR AND PEOPLE LIVING IN THE FAMILY INCLUDED f. Do you speak to your friends about your feelings, about confidential matters (things you would not want others to know about, e.g. secrets)? CARER / MENTOR NOT INCLUDED. IF RESPONDENT SPEAKS ONLY TO CARER THE ANSWER IS: NO

31

18. I will ask further questions about your everyday life. Please answer YES, NO, or SO-SO, like with the previous question.

IF THE ANSWER IS YES OR SO-SO Please give some (specific) examples!

MARK WHETHER RESPONDENT GAVE EXAMPLES! Yes (agree)


No

N/a

DK/ NA

Yes

No

1

2

3

8

9

1

2

1

2

3

8

9

1

2

3

8

9

1

2

X

1

2

3

8

9

1

2

X

(disagree )

Now we will briefly talk about your rights. g. Are you told about your rights? h. Can you decide what you spend your money, or part of your money, on? Now I will ask you about your feelings. i. j.

Do you sometimes worry or fear that someone will hurt you? Are you successful in the things you do (e.g. work, learning, everyday activities)? IF NOT, YOU MIGHT ASK IN ADDITION: Are you commended for the things you do (e.g. work, learning, everyday activities)?

X X

I will now ask you about your health and the healthcare you receive. k. Do you do any physical exercise, sports (e.g. going for walks, on excursions or hiking, doing gardening)? IF THE RESPONDENT HAS SEVERE PHYSICAL DISABILITIES, PLEASE ASK IF HE/SHE IS GIVEN EXERCISE BY SOMEONE? l. Do you get your teeth checked by a dentist?

1

2

3

8

9

X

1

2

3

8

9

X

I will now ask you about your financial situation, everyday circumstances, and daily activities. m. Do you have enough money to buy what you need? n. Are you satisfied with the food you eat daily? o. Do you have the chance to do things you are interested in? p. Do you use the internet?

1

2

3

8

9

X

1

2

3

8

9

X

1

2

3

8

9

1

2

X

1

2

3

8

9

1

2

X

32

19. How satisfied are you with your life in general? Please tell us how satisfied or dissatisfied you are on a scale of 0-10! OFFER THE USE OF ANSWER CARDS! Dissatisfied  00

01

Satisfied  02

03

05

04

06

07

08

09

10

SECTION D: RELATIONSHIPS

20. Finally I will ask you some questions about your family. Who are you in touch with? FOR RESPONDENTS WITH INTELLECTUAL DISABILITIES OR IF RESPONDENT DOES NOT UNDERSTAND THE QUESTION: Who do you meet and talk to? How often? MARK UP ACCORDING TO ANSWER!

never

Sometimes: on major holidays (12 times a year)

Often (at least once a month)

They live togeth er

Does not know

Has died

a. Mother (not only natural)

1

2

3

4

5

6

9

X

b. Father (not only natural)

1

2

3

4

5

6

9

X

c. Spouse, cohabiting partner, girlfriend, boyfriend, fiancée, fiancé

1

2

3

4

5

6

8

9

X

d. Children, grandchildren

1

2

3

4

5

6

8

9

X

e. Siblings, half sibling, step siblings

1

2

3

4

5

6

8

9

X

f.

1

2

3

4

5

6

9

X

1

2

3

4

5

6

8

9

X

1

2

3

4

5

6

8

9

X

1

2

3

4

5

6

8

9

X

Grandparents

g. Other relative (please specify): …………………………. h. Other relative (please specify): …………………………. i. Other relative (please specify): ………………………….

33

No such D person K/ N A

21. Who do you email or speak to on the phone in your family? How often? MARK UP ACCORDING TO ANSWER! IF IT IS CLEAR FROM A PREVIOUS QUESTION THAT GIVEN PERSON HAS EITHER DIED OR IS NOT KNOWN BY RESPONDENT, DO NOT ASK, ONLY MARK UP!

never



They live togeth er

Does not know

Has died

Mother (not only natural)

1

2

3

4

5

6

9

X

k. Father (not only natural)

1

2

3

4

5

6

9

X

1

2

3

4

5

6

8

9

X

m. Children, grandchildren

1

2

3

4

5

6

8

9

X

n. Siblings, half sibling, step siblings

1

2

3

4

5

6

8

9

X

o. Grandparents

1

2

3

4

5

6

9

X

1

2

3

4

5

6

8

9

X

1

2

3

4

5

6

8

9

X

1

2

3

4

5

6

8

9

X

j.

l.

Spouse, cohabiting partner, girlfriend, boyfriend, fiancée, fiancé

p. Other relative (please specify): …………………………. q. Other relative (please specify): …………………………. r. Other relative (please specify): ………………………….

Thank you for helping us with your answers!

34


Questions for the interview!

A.

Questions for the interviewer: The assisting third person took part in: Interpreting

B.

D K/ N A

Yes

No

Yes

No

Was not present

a. Questions in SECTION A

1

2

1

2

5

9

X

b. Questions in SECTION B

1

2

1

2

5

9

X

c. Questions in SECTION C

1

2

1

2

5

9

X

d. Questions in SECTION D

1

2

1

2

5

9

X

IF THERE WAS AN ASSISTING THIRD PERSON PRESENT (DECISION POINTS 1 OR 2 YES), HE/SHE WAS: 01 02 03 04 05 06 07 08 09 10 11 12 13

C.

Answering

– – – – – – – – – – – – –

Mentor, support worker Nurse, carer Development teacher Mental health professional Guardian Manager MORE THAN ONE Mother ANSWER IS POSSIBLE! Father Spouse Son or daughter Grandparents Other relative Other (please specify)……………………………..

Has the respondent used the answer cards? 1 – Yes 2 – No

END OF INTERVIEW: ...... hour ...... minute Thank you for your work!

35

No.

Client No. from Client Questionnaire

Institution No.


“CAREGIVER” QUESTIONNAIRE 2015 Participation is voluntary!

Town/city: .......................................................................................... District (of Budapest): I hereby declare that I have administered the questionnaire according to the rules. The will handle all data I have acquired confidentially, sharing it with only research personnel to whom it pertains.

Signature of interviewer..................................................... Interviewer’s card number START OF INTERVIEW:

From ……… Hour ……… Minute, ……… Month ……… Day, 2015 INTRODUCTION: My name is ……………….. and I am a researcher / interviewer with TÁRKI Social Research Institute. I am a Social Worker student / ……………….. at ELTE University. OPENING REMARKS, PLEASE READ IT OUT: TÁRKI Social Research Institute (TÁRKI) was commissioned by the Equal Opportunities of Persons with Disabilities Non-profit Ltd. (FSZK) and the Hand in Hand Foundation to carry out a questionnaire-based survey among people with disabilities. We would like to ask you for your assistance in our research. As part of our research we will interview via questionnaires people with disabilities, their caregivers, managers of residential institutions and group homes, as well as private households. The aim of this research is to collect information about the quality of life of people with disabilities, their living conditions, the quality of services available in their care, as well as to learn about their everyday lives. TÁRKI will handle all data collected during the research confidentially and guarantee that all information will be processed anonymously through statistical methods, i.e. respondents will not be identifiable by name in any research paper based on the survey. Data acquired during the survey serve only scientific purposes. Participation in the survey is voluntary. Parts of this questionnaire is identical to that used in interviewing the people with disabilities, depending on the type and severity of their specific condition.

QUESTIONS WITH REGARDS TO RESPONDENT 1. RESPONDENT’S RELATION TO CLIENT: MORE THAN ONE ANSWER IS POSSIBLE! RESPONDENT CANNOT BE ANOTHER CLIENT! Yes

No

DK /N A

h. Mentor, support worker

1

2

9

X

i.

Nurse, carer

1

2

9

X

j.

Development teacher

1

2

9

X

k. Mental health professional

1

2

9

X

l.

1

2

9

X

1

2

9

X

1

2

9

X

Manager

m. Family member: parent/grandparent/sibling/spouse or cohabiting partner, other relative n. Other (please specify)………………………………………………………

2. Respondent’s gender: 1 – Male 2 – Female 3. How long have you been supporting the client? Since ............ (year) 8 – n/a 9 – DK/NA

X –

37

X –

QUESTIONS WITH REGARDS TO CLIENT 4. Your client’s gender? 1 – Male 2 – Female X – 5. When was your client born? In 19............ year 9 – DK/NA

X –

6. Where was your client born? Country: ............................................................................................. Town/city: .......................................................................................... District (of Budapest): 9 – DK/NA X – 7. Your client’s type of disability (his/her primary disability): 1 2 3 4

– – – –

Intellectual disability Autism spectrum disorder Psychosocial disability (schizophrenia) Profound intellectual and multiple disabilities

9 – DK/NA

X –

8. Does your client have other disabilities? Please indicate the disabilities’ severity (degree)! PLEASE NOTE THAT THIS QUESTION IS WITH REGARDS TO SECONDARY OR TERTIARY DISABILITIES THAT THE CLIENT HAS IN ADDITION TO THAT (OR THOSE) MARKED IN QUESTION 7! None

Mild

Moderate

Severe

Marked in question 7

DK /N A

e. Physical disability

1

2

3

4

5

9

X

f.

1

2

3

4

5

9

X

g. Hearing impairment

1

2

3

4

5

9

X

h. Speech impairment

1

2

3

4

5

9

X

i.

Autism spectrum disorder

1

2

3

4

5

9

X

j.

Intellectual disability

1

2

3

4

5

9

X

1

2

3

4

5

9

X

1

2

3

4

5

9

X

1

2

3

4

5

9

X

Visual impairment

k. Epilepsy l.

Other disability, (please specify) ……………………………………………. m. Other disability, (please specify) …………………………………………….

9. All in all how would you describe your client’s level of independence? 1 – He/she takes care of him/herself without help or supervision 2 – Partially independent, de but requires supervision or some degree of help, might be left alone for hours 3 – Requires help in almost all areas, requires constant supervision and complete care 9 – DK/NA

X –

38

SECTION A: SOCIODEMOGRAPHICS, FAMILY, STATE OF HEALTH 10. Client’s place of residence (NOT HIS/HER PERMANENT ADDRESS BUT WHERE HE/SHE LIVES): Town/city: …………………………………………………………. District (of Budapest): 11. Client’s marital status: 1 2 3 4 5 6 7 8

– – – – – – – –

Single Married Separated Separated and Cohabiting Cohabiting Divorced Divorced and Cohabiting Widow(er)

9 – DK/NA

X –

12. Does your client have any children? 1 – Yes: ……………………. children 2 – No 9 – DK/NA

X –

13. Does your client have any siblings? 1 – Yes: ……………………. siblings 2 – No 9 – DK/NA

X –

14. Are your client’s parents alive? 1 – Yes, both 2 – Only mother 3 – Only mother 4 – None of them 9 – DK/NA

X –

15. How long has your client been living here? (INSTITUTION, GROUP HOME, PRIVATE HOUSEHOLD)? since............

X –

0 1 2 3 4 9

– – – – – –

Since birth Less than one year 1-5 years 6-10 years Over 10 years DK/NA X –

39

17 - RE

16. Where did your client live before? MORE THAN ONE ANSWER IS POSSIBLE! Yes

No

DK /N A

a. With family (parents, grandparents, adult sibling, spouse/ cohabiting partner, his/her child, distant relative

1

2

9

X

b. With foster parents

1

2

9

X

c. Residential school

1

2

9

X

d. Institution for children

1

2

9

X

e. Another institution for adults

1

2

9

X

f.

State care

1

2

9

X

g. Post state care

1

2

9

X

h. Alone in private household

1

2

9

X

i.

1

2

9

X

1

2

9

X

1

2

9

X

1

2

9

X

In private household with spouse, cohabiting partner, own children

j.

In private household with others, non-family members: lodgings or private household with support k. Other (please specify): ………………………………………………………… l.

Not known

17. IF INTERVIEW TAKES PLACE IN A FAMILY HOME OR RESPONDENT HAS LIVED IN A FAM ILY! QUESTION NO. 1 Who did your client live with (who raised him/her) before the age of 18? MORE THAN ONE ANSWER IS POSSIBLE! Yes

No

DK /N A

h. With both parents

1

2

9

X

i.

With only one parent

1

2

9

X

j.

With grandparent(s)

1

2

9

X

k. With other relative(s)

1

2

9

X

l.

1

2

9

X

1

2

9

X

1

2

9

X

With foster parents

m. Other (please specify)………………………………………………………… n. Other (please specify)………………………………………………………….

40

18. Who is your client in touch with? Who does he/she meet, talk to? How often? IF IT IS CLEAR FROM QUESTION 14 THAT ONE OF THE PARENTS HAS DIED, DO NOT ASK, ONLY MARK UP!

never



They live togeth er

Does not know

Has died

s. Mother (not only natural)

1

2

3

4

5

6

9

X

t.

Father (not only natural)

1

2

3

4

5

6

9

X

u. Spouse, cohabiting partner, girlfriend, boyfriend, fiancée, fiancé

1

2

3

4

5

6

8

9

X

v. Children, grandchildren

1

2

3

4

5

6

8

9

X

w. Siblings, half sibling, step siblings

1

2

3

4

5

6

8

9

X

x. Grandparents

1

2

3

4

5

6

9

X

1

2

3

4

5

6

8

9

X

1

2

3

4

5

6

8

9

X

1

2

3

4

5

6

8

9

X

y. Other relative (please specify): …………………………. z. Other relative (please specify): …………………………. aa. Other relative (please specify): ………………………….


19. Who does your client email or speak to on the phone in his/her family? How often? IF IT IS CLEAR FROM THE PREVIOUS QUESTION OR QUESTION 14 THAT GIVEN PERSON HAS EITHER DIED OR IS NOT KNOWN BY CLIENT, DO NOT ASK, ONLY MARK UP!

never



They live togeth er

Does not know

Has died

a. Mother (not only natural)

1

2

3

4

5

6

9

X

b. Father (not only natural)

1

2

3

4

5

6

9

X

c. Spouse, cohabiting partner, girlfriend, boyfriend, fiancée, fiancé

1

2

3

4

5

6

8

9

X

d. Children, grandchildren

1

2

3

4

5

6

8

9

X

e. Siblings, half sibling, step siblings

1

2

3

4

5

6

8

9

X

f.

1

2

3

4

5

6

9

X

1

2

3

4

5

6

8

9

X

1

2

3

4

5

6

8

9

X

1

2

3

4

5

6

8

9

X

Grandparents

g. Other relative (please specify): …………………………. h. Other relative (please specify): …………………………. i. Other relative (please specify): ………………………….

41


QUESTIONS 20-22 ARE ONLY FOR CLIENTS WITH PSYCHOSOCIAL DISABILITY (SCHIZOPHRENIA), SEE QUESTION 7 CODE 3! 20.

IF CLIENT DID NOT LIVE WITH BOTH PARENTS, IN QUESTION 17 FROM b) TO g) THERE MUST BE ONE CODE 1 If your client did not live with both parents, what was the reason for that? 1 2 3 4

– – – –

Parents divorced One parent died HE/SHE does not know one or either one of his/her parents Parents gave up their right to raise respondent

9 – DK/NA

X –

21. When was your client’s psychological condition first diagnosed? At the age of ............

OR

In year ............ 99 – DK/NA

X –

22. Has your client ever been hospitalized for more than two weeks in connection with his/her condition within the first five years following his/her diagnosis? 1 – Yes

22.a. How many times? 1 2 3 4 9

– – – – –

1-2 times 3-4 times 5-6 times more than 6 times DK/NA X –

2 – No 9 – DK/NA X – PLEASE ASK EVERYONE! 23. Does your client have friends (with whom he/she is confidential, has common programs either in-house or from the outside)? 1 – Yes: around ……………………. friends 2 – No 9 – DK/NA

X –

24. Is your client in a relationship? 1 – Yes, married 2 – Yes, has partner (cohabiting partner, girlfriend, boyfriend, fiancée, fiancé) 3 – No – DK/NA

9

X –

24 a) IF HE/SHE IS IN A RELATIONSHIP QUESTION 24 CODE 1 OR

2 Do they live together? 1 – Yes

2 – No

X –

42

25. Does your client have any chronic health conditions besides his/her primary condition or conditions in connection with it.? 1 – Yes, (please specify) ……………………………………………………. 2 – No 9 – DK/NA

X –

26. Does your client smoke regularly? 1 – Yes

26.a. How many cigarettes per day? ………………………… cigarettes 99 – DK/NA X –

2 – No 9 – DK/NA-

X –

27. Does your client drink alcoholic beverages? 1 – Yes, quite a lot 2 – Yes, with moderation 3 – Not at all 9 – DK/NA

X –

28. Is your client on any medication? 1 – Yes

2 – No

GOT TO 30

9 – DK/NA X –

29. IF HE/SHE IS ON MEDICATION QUESTION 28 YES Please list the names of drugs and their daily dosage taken regularly by your client: SEE LIST OF DRUGS! MORE THAN ONE ANSWER IS POSSIBLE! DRUG’S NAME

DAILY DOSAGE

1

X

2

X

3

X

4

X

5

X

6

X

7

X

8 – He/she is not on any medication. 30. Does your client have any regular behavioral problems? 1 – Mild 2 – Severe 3 – No 9 – DK/NA

X –

31. Does your client show aggression? 1 – Yes, towards others 2 – Yes, towards him/herself 3 – No 9 – DK/NA

33 - RA

X –

43

32. IF CLIENT SHOWS AGRESSION QUESTION 31 CODE 1 OR 2 Have any restrictive measures been applied to your client in the past 12 months? 1 – Yes, (please specify)…………………………………………………………. 2 – No 9 – DK/NA

X –

33. What human or professional services does your client currently receive? IF YES Receives?

1 – Yes 2 – No

How often? 1 – daily 2 – more than once per week 2 – once per week 3 – once in 2-3 weeks 4 – monthly 5 – less often than monthly

How long is one session usually?

Where do these sessions take place? 1 – At home 2 – Healthcare institution 3 – Other institution

D K/ N A

a. Physical therapy

1

2

1 2 3 4 5 9 X ……minutes

1

2

3

9 X

9

X

b. Social and mental health program

1

2

1 2 3 4 5 9 X ……minutes

1

2

3

9 X

9

X

c. Psychiatric program

1

2

1 2 3 4 5 9 X ……minutes

1

2

3

9 X

9

X

1

2

1 2 3 4 5 9 X ……minutes

1

2

3

9 X

9

X

1

2

1 2 3 4 5 9 X ……minutes

1

2

3

9 X

9

X

d. Developmental education program e. Other (please specify) …………………………

34. Does your client have an individual development program? 1 – Yes

34.a. When was it last reviewed? ………………………… year 9 – DK/NA X –

2 – No 9 – DK/NA-

X –

35. Please give an estimate as to how much time your client’s care requires on an average day in total, including feeding, dressing, bathing, transporting or moving! ............

hours OR IF LESS THAN ONE HOUR

............

minutes daily in total

99 – DK/NA

X –

36. Please give an estimate as to how much time your client’s supervision requires on an average day! ............

hours OR IF LESS THAN ONE HOUR

............

minutes daily in total

77 – requires 24 hour supervision 88 – does not require supervision at all 99 – DK/NA X –

44

37. Does your client need any help with the following activities? Yes

No

n/a

DK /N A

a.

Getting dressed daily

1

2

8

9

X

b.

Getting dressed (choosing the right clothes) for special occasions

1

2

8

9

X

c.

Bathing

1

2

8

9

X

d.

Using the toilet

1

2

8

9

X

e.

Eating

1

2

8

9

X

f.

Drinking

1

2

8

9

X

g.

Moving, changing position

1

2

8

9

X

h.

Getting to a place known by client in public

1

2

8

9

X

i.

Daily verbal communication (having a conversation)

1

2

8

9

X

j.

Making a phone call

1

2

8

9

X

k.

Texting

1

2

8

9

X

l.

Shopping

1

2

8

9

X

1

2

8

9

X

1

2

8

9

X

m. Other (please specify): ………………………………… n. Other (please specify): …………………………………

38. Is your client under guardianship? 1 – Yes, complete restriction on capacity to act 2 – Yes, partial restriction on capacity to act in all matters 3 – Yes, partial restriction on capacity to act in certain matters 4 – Supported decision making 5 – No GO TO 40 9 – DK/NA X – 39. If your client has a guardian or mentor, what is his/her legal status? 1 – Legal guardian 2 – Non-legal guardian 3 – Professional mentor 4 – Non-professional mentor 9 – DK/NA

X –

SECTION B: EDUCATION AND JOB MARKET 40. What is the highest degree or level of school your client has completed? 0 1 2 3 4 5 6

– – – – – – –

No schooling completed Less than 8th grade 8th grade of Elementary School Trade/technical/vocational training High school graduate, diploma or the equivalent Post High School Trade/technical/vocational training Bachelor’s degree or Master’s degree

9 – DK/NA

X –

45

41. Has your client ever attended a special education school or course? Has he/she attended such school or class? 1 – Yes

41.a. What type of educational program? 1 – Elementary School 2 – Vocational training 9 – DK/NA

2 – No 9 – DK/NA

MORE THAN ONE ANSWER IS POSSIBLE!

X –

X –

42. Is your client able to read? 1 – Yes

2 – No

44 - RE

9 – DK/NA

X –

43. Does your client understand what he/she reads? 1 – Can read words out loud, but does not fully understand them 2 – Understands words, sentences, paragraphs on the literal level. 3 – Fully comprehends what he/she reads, understands linguistic references, shades of meaning and irony, can draw conclusions from what he/she reads. 9 – DK/NA

X –

44. Does your client have any qualifications? 1 – Yes

44.a. What qualification? ………………………………………………………………………………... 9 – DK/NA

2 – No 9 – DK/NA

X –

X –

45. Has your client completed any other courses? 1 – Yes

45.a. What course has he/she completed? ………………………………………………………………………………... 9 – DK/NA

2 – No 9 – DK/NA

X –

X –

46. Does your client have a job (at present)? 1 – Yes

2 – No

GO TO 51

9 – DK/NA

X –

46a. How many hours does he/she work per day? ............ hours daily 99 – DK/NA

X –

46b. How long has he/she been working? since............ (year) 9 – DK/NA

X –

47. Type of job at present: 1 – Developmental or preparatory training 2 – Vocational rehabilitation job 3 – Accredited employment 4 – Vocational therapy 5 – Employment on the open job market 6 – Other (please specify): ……………………………………………………………… 9 – DK/NA

X –

46

48. Place of work: 1 – At home 2 – In the institution 3 – Outside institution/home, (please specify): …………………………………………… 9 – DK/NA

X –

49. What is your clients job, what kind of tasks does he/she do? ........................................................................................................................................................................ ........................................................................................................................................................................ 9 – DK/NA

X –

50. How much money does he/she earn at his/her job per month? NET AMOUNT, PLEASE! ………………............ 999 – DK/NA

thousand HUF / month

X –

PLEASE ASK EVERYONE! 51. Does your client receive: Yes

No

DK /N A

a. Disability pension

1

2

9

X

b. Old age pension

1

2

9

X

c. Orphan’s allowance

1

2

9

X

d. Other (please specify)………………………….

1

2

9

X

52. IF YOUR CLIENT LIVES IN AN INSTITUTION OR GROUP HOME How much does your client pays in fees? ………………............ 999 – DK/NA

thousand HUF / month

X –

47

53. Does your client have …? Yes

No

a. Debit or credit card?

1

2

X

b. Debit (bank) account?

1

2

X

c. Any savings (pension or life insurance included)

1

2

X

d. TV set?

1

2

X

e. DVD player?

1

2

X

f. Automobile (his/her own or by company that he/she can use for private purposes)? IF YES: How many?

pc

0

X

g. Computer? IF YES: How many?

pc

0

X

h. Land line or mobile phone?

1

2

X

i. Internet access?

1

2

X

j. Residential property

1

2

X

k. Summer house, garden, agricultural land

1

2

X

SECTION C: RESIDENTIAL CIRCUMSTANCES, EXPECTED CHANGES 54. How long has your client been living in this institution / group home / private household? since ………………............ 9 – DK/NA

(year)

X –

55. How many people in one room ? ………………............ 99 – DK/NA

person/room

X –

56. IF YOUR CLIENT DOES NOT HAVE HIS/HER OWN ROOM QUESTION 55: MORE THAN 1 Who does your client share his/her room with? 1 – Other client(s) 2 – spouse, cohabiting partner 3 – other relative 4 – Other (please specify) 9 – DK/NA

X –

57. How many people share the same bathroom? ………………............ 99 – DK/NA

person/bathroom

X –

58. Are there any plans to change your client’s form of residence? Yes

No

DK /N A

a. Client is planning to change it

1

2

9

X

b. Client’s relative is planning to change it

1

2

9

X

c. The institution / group home planning to change it

1

2

9

X

48

59. IF THERE IS A PLAN TO CHANGE IT QUESTION 58 YES IN ANY AT LEAST ONE ROW If your client is going to move, when and where to? MARK UP ACCORDING TO ANSWER, NO NEED TO ASK EVERY LINE! Is it planned?

Is your client already on a waiting list?

When? Which year?

1 – Yes 1 – Yes

2 – No

2 – No

D K/ N A

d. Group home

1

2

9 X

1

2

9 X

……… year

9

X

e. Institution

1

2

9 X

1

2

9 X

……… year

9

X

1

2

9 X

1

2

9 X

……… year

9

X

g. Family

1

2

9 X

1

2

9 X

……… year

9

X

h. Other place, (please specify): ……………………………

1

2

9 X

1

2

9 X

……… year

9

X

f.

Supported accommodation

49

SECTION D: QUALITY OF LIFE 60. Now answer the questions from YOUR CLIENT’S POINT OF VIEW, please! Yes (agree)


No (disagree)

N/a

DK /N A

1

2

3

8

9

X

1

2

3

8

9

X

First I will ask you about your client’s personal decisions. q. Can he/she choose what clothes to wear in the morning? r. Does he/she stand up for him/herself or others? (e.g. does he/she defend him/herself or others, stick up for what’s right)

Now I will ask you what activities does he/she partake in, who does he/she spend his/her time with. s. Does he/she take part in or go to social activities? (e.g. cinema, concerts, local events or city festivals) t. Does he/she meet and talk with neighbors or people in his/her neighborhood? PEOPLE WITHIN THE INSTITUTION DO NOT COUNT!

1

2

3

8

9

X

1

2

3

8

9

X

Now I will ask you about your client’s family and friend, and about the help he/she receives from them. u. Is there someone your client can turn to for advice? CARER/ MENTOR AND PEOPLE LIVING IN THE FAMILY INCLUDED v. Does he/she speak to his/her friends about his/her feelings, about confidential matters (things he/she would not want others to know about, e.g. secrets)? CARER / MENTOR NOT INCLUDED. IF RESPONDENT SPEAKS ONLY TO CARER THE ANSWER IS: NO

1

2

3

8

9

X

1

2

3

8

9

X

w. Is your client told about his/her rights?

1

2

3

8

9

X

x. Can he/she decide what he/she spends his/her money, or part of his/her money, on?

1

2

3

8

9

X

1

2

3

8

9

X

1

2

3

8

9

X

Now we will briefly talk about your client’s rights.

Now I will as you about your client’s feelings. y. Does he/she sometimes worry or fear that someone will hurt him/her? z. Is your client successful in the things he/she does (e.g. work, learning, everyday activities)?

I will now ask you about your client’s health and the healthcare he/she receives. aa. Does your client do any physical exercise, sports (e.g. going for walks, on excursions or hiking, doing gardening)? bb. Does your client get his/her teeth checked by a dentist?

1

2

3

8

9

X

1

2

3

8

9

X

I will now ask you about your client’s financial situation, everyday circumstances, and daily activities. cc. Does your client have enough money to buy what he/she needs? dd. Is your client satisfied with the food he/she eats daily? ee. Does your client have the chance to do things he/she is interested in? ff. Does your client use the internet?

50

1

2

3

8

9

X

1

2

3

8

9

X

1

2

3

8

9

X

1

2

3

8

9

X

Thank you for helping us with your answers! END OF INTERVIEW: ...... hour ...... minute OBSERVATION SHEET – Questions for the interview! A.

Were the clients / family members neat (shaved, combed, clean and tidy hair)? 1 – No, most people were not, or no one was neat. 2 – Varying. 3 – Yes, everyone, or almost everyone

B.

Were the rooms clean? 1 – Rather dirty or very dirty 2 – So-so 3 – Clean or very clean

C.

D.

E.

Were the following in good condition: Very bad condition

Bad condition

Rather good condition

Good condition

Very good condition

Have not seen it

n/a

DK /N A

a. The building(s)

1

2

3

4

5

6

7

9

X

b. The property, the rooms

1

2

3

4

5

6

7

9

X

c. The yard, the garden

1

2

3

4

5

6

7

9

X

Was anyone else present at the interview? Yes

No

DK /N A

a. The interviewed client

1

2

9

X

b. Other clients

1

2

9

X

c. Other carers (nurse, support worker, family, etc.)

1

2

9

X

d. Other (please specify): ……………………………

1

2

9

X

Other comments: ....................................................................................................................................................................... ....................................................................................................................................................................... .......................................................................................................................................................................

Thank you for your work!

51

No.

Client No. from Client Questionnaire

Institution No.


“HEAD OF HOUSEHOLD” QUESTIONNAIRE 2015 Participation is voluntary!

Town/city: ........................................................................................... District (of Budapest): I hereby declare that I have administered the questionnaire according to the rules. The will handle all data I have acquired confidentially, sharing it with only research personnel to whom it pertains.

Signature of interviewer..................................................... Interviewer’s card number START OF INTERVIEW: From ……… Hour ……… Minute, ……… Month ……… Day, 2015

52

SECTION A: FAMILY, HOUSEHOLD Fist I would like to know who the client lives with within the household. 1. How many of you live within the household altogether? ................ people X – 2. I will now ask you questions about members of the household. Let’s start with you! No. Given name

Has a Economic activity: Relation to disability? Year of birth client: 1 - Yes Do you have a job? IF he/she does not 2 - No Male Female 01 – actively seeking (or know: 01 - father a. workfare participant) age group: 02 - mother 02 – underage Yes No dependent, student 1- 17 years old or 03 - sibling 04 – 03 - adult dependent younger son/daughter (e.g. disabled person, 2- 18-39 years 05 – spouse / housekeeper) old cohabiting 04 - Childcare 3- 40-59 years partner allowance, Childcare old 06 - other benefit, Child raising 4- 60 year old or relative support over 07 - other 05 – Carer’s allowance 06 –pension (old age, Widow(er)’s or disability) 07 - unemployed 08 - other 88 – has never worked 99 - DK/NA Gender

Were you a member of the household in 2014? Yes

No

1.

1

2

b.

1

2

1

2

2.

1

2

c.

1

2

1

2

3.

1

2

d.

1

2

1

2

4.

1

2

e.

1

2

1

2

5.

1

2

f.

1

2

1

2

6.

1

2

g.

1

2

1

2

7.

1

2

h.

1

2

1

2

8.

1

2

i.

1

2

1

2

9.

1

2

j.

1

2

1

2

3.

Is there someone who was a member of the family / household in 2014, but is no longer a member? Who? IF YES, PELASE ASK THE HOUSEHOLD TABLE QUESTIONS WITH REGARDS TO THAT PERSON TOO.

1.

1

2

k.

1

2

1

2

2.

1

2

l.

1

2

1

2

3.

1

2

m.

1

2

1

2

4.

1

2

n.

1

2

1

2

5.

1

2

o.

1

2

1

2

HEAD OF HOUSEHOLD: PERSON WHO IS 18 YEARS OLD OR OVER, FAMILIAR WITH MATTERS OF THE HOUSEHOLD, LIVED TOGETHER WITH CLIENT IN 2014.

53

INTERVIEWER: PICK HEAD OF HOUSEHOLD! From now on I will be asking you as the head of the household questions about the household.

Head of Household’s No. in household table

First I will ask questions about yourself! 4. What is your marital status? 1 2 3 4 5 6 7 8

– – – – – – – –

Single Married Separated Married, Cohabiting Cohabiting Divorced Divorced, Cohabiting Widow(er)

9 – DK/NA

X –

5. What is the highest degree or level of school you have completed? 1 2 3 4 5 6

– – – – – –

Less than 8th grade 8th grade of Elementary School Trade/technical/vocational training High school graduate, diploma or the equivalent Post High School Trade/technical/vocational training Bachelor’s degree or Master’s degree

9 – DK/NA

X –

6. Did you hold a job in 2014? 1 – Yes

6.a. How many months did you work in 2014? 1 – ………….. months 99 – DK/NA X – 6.b. In what form were you employed? 1 2 3 9

2 – No 9 – DK/NA X –

54

– – – –

self-employed employee in managerial position employee in subordinate position DK/NA X –

7. What benefits did you receive in 2014? 1 – benefits connected to childcare 2 – benefits connected to unemployment 3 – pension or pension-like benefits 4 – social benefits 5 – stipend 6 – housing benefit

MORE THAN ONE ANSWER IS POSSIBLE

7 – did not receive any 9 – DK/NA X –

I will now ask you about adult members of the household with a disability. MORE THAN ONE ANSWER IS POSSIBLE

8. Did he/she receive the following benefits in 2014? IF YES: What amount per month? Please give net amounts! For how many months did he/she receive the benefit in 2014?

IF HE/SHE RECEIVED THE BENEFIT Yes

No

DK/ NA

Amount per month (net)

DK/ NA

How many months?

DK/ NA

gg. disability benefit

1

2

9

X

………………….H UF

9

X

………… month

99

X

hh. Higher-rate family allowance (for adult)

1

2

9

X

………………….H UF

9

X

………… month

99

X

ii. disability allowance

1

2

9

X

………………….H UF

9

X

………… month

99

X

jj. other (e.g. widow(er)’s pension, orphan’s allowance, etc.), (please specify): ……………….

1

2

9

X

………………….H UF

9

X

99

X

………… month

9. Do you pay healthcare contribution for him/her? 1 – No, somebody else pays (e.g. he/she receives disability pension, old age pension, etc.) 2 – No, he/she received exemption 3 – Yes, he/she pays it 4 – Other (please specify): ………………….…………… 9 – DK/NA X – I will now ask you about the adult who is the primary (if there is more than one person) caregiver of this person with disability: 10. Who is the primary caregiver of this member of the household with disability? ONLY ONE ANSWER

Persons No. In table

11. How long has he/she/she been taking care of his/her ……………….(relative)? Since the age of .........……. OR since ............ year OR 999 – DK/NA

X –

55

for ………….. years

12. Did the caregiver receive carer’s allowance OR regular social benefit in 2014? 1 – Yes 2 – No, because he/she has a fulltime job 3 – No, for other reasons, (please specify) ………………………………………. 9 – DK/NA 13.

X –

IF QUESTION 12 CODE 1 (YES, he/she received.) Did the carer household member receive any of the following benefits in 2014? IF YES: What amount per month? NET AMOUNT, PLEASE! For how many months did he/she receive the benefit in 2014? ONLY READ THE AMOUNTS IN THE TABLE IF HE/SHE CANNOT SAY ON HIS/HER OWN! IF HE/SHE RECEIVED THE BENEFIT

- carer’s allowance (basic rate)

Yes

No

DK/ NA

1

2

9

Amount per month (net) X

……………….HUF

DK/ NA

How many months?

9

X

9

X

29.500 HUF 1

- carer’s allowance (top rate)

1

2

9

X

regular social benefit

d. other social benefit, (please specify)…….

99

X

99

X

……………….HUF 2

9

X

9

X ………… month

1

2

9

X

………………….H UF

9

X

………… month

99

X

1

2

9

X

………………….H UF

9

X

………… month

99

X

1

2

9

X

………………….H UF

………… month

99

X

14. Did the carer earn any money in a job in 2014? 1 – Yes, at home, 2 – Yes, outside the home 3 – No GO TO 20 9 – DK/NA

X

………… month

44.250 HUF

53.100 HUF

c.

99

……………….HUF

- carer’s allowance (higher rate)

b. discretionary carer’s allowance

………… month

DK/ NA

X –

QUESTION 15 – 19: IF question 14 CODE 1 OR 2 (YES: Worked at home, OR outside the home). 15. In what form was he/she employed? 1 – self-employed 2 – employee in leadership position 3 – employee in subordinate position 4 – workfare participant 5 – casual work 8 – Other (please specify)……………………………………..

56

9 – DK/NA

X –

16. What industry did he/she work in? Please answer with the help of answer sheet 1 ! 01 02 03 04

– – – –

05 – 06 07 08 09 10

– – – – –

Agriculture, Fishing, and Forestry Mining, stone quarrying Manufacturing Electric utilities, natural gas utilities, air conditioning Water utilities, wastewater utilities, waste management, environmental remediation Construction Whole sale and retail, auto repair Transportation, Warehousing Hotels and motels, restaurants Information, communication

99 – NT

11 12 13 14 15

– – – – –

16 17 18 19 20 21

– – – – – –

X –

17. How many hours per day did he/she work in 2014? .........……. hours 99 – DK/NA

X –

18. How many months did he/she work in 2014-ben? .........……. months 99 – DK/NA

X –

19. How much did he/she earn per month in 2014-ben? ......……………..……. HUF/month 9 – DK/NA

X –

GO TO 24

57

Finance, insurance Real Estate Science, technology Accounting Public administration, Law Enforcement; Social security Education Healthcare, Social services Arts, entertainment, leisure Other services Domestic services; Foreign organization (e.g. international organization, embassies… etc.)

Questions 20 – 23: IF question 14 CODE 3 (Did NOT earn any money in a job). 20. Did he/she have a job before he/she become a carer? 1 – Yes 20.a. What was his/her job?

…………………………………………………………………… …………... 9 – DK/NA

X –

20.b. In what form was he/she employed (in his/her last job)? 1 2 3 4 5

– – – – –

self-employed employee in leadership position employee in subordinate position workfare participant casual work

8 – Other (please specify) ………….. 9 – DK/NA X – 2 – No 9 – DK/NA

X –

GO TO 24

21. What industry did he/she work in? Please answer with the help of answer sheet 1! 01 02 03 04

– – – –

05 – 06 07 08 09 10

– – – – –

Agriculture, Fishing, and Forestry Mining, stone quarrying Manufacturing Electric utilities, natural gas utilities, air conditioning Water utilities, wastewater utilities, waste management, environmental remediation Construction Whole sale and retail, auto repair Transportation, Warehousing Hotels and motels, restaurants Information, communication

99 – NT

X –

58

11 12 13 14 15

– – – – –

16 17 18 19 20 21

– – – – – –

Finance, insurance Real Estate Science, technology Accounting Public administration, Law Enforcement; Social security Education Healthcare, Social services Arts, entertainment, leisure Other services Domestic services; Foreign organization (e.g. international organization, embassies… etc.)

22. How many hours per day did he/she work? 1 2 3 4

– – – –

Full time (8 hours/day) 6 hours/day 4 hours/day casual work

9 – DK/NA

X –

23. How much did he/she earn per month? ......……………..……. HUF/month 9 – DK/NA

X –

24. Does he/she currently have a job? 1 – Yes 2 – No 9 – DK/NA

GO TO 29

X –

25. If he/she were not be his/her ……………..’s carer, do you think he/she would be able to find a job? 1 2 3 4

– – – –

Certainly yes Probably yes Probably no Certainly no

9 – DK/NA

X –

26. If he/she were not be his/her ……………..’s carer, do you think he/she would get a job? 1 – Yes 2 – No, only a part time job 3 – No, not at all 9 – DK/NA

X –

27. How much do you think he/she would earn per month (net amount)? ......……………..……. HUF/month 9 – DK/NA

X –

28. How much do you think he/she would earn per month (net amount) if he/she was employed as a carer? ......……………..……. HUF/month 9 – DK/NA

X –

59

PLEASE ASK EVERYONE! 29. Did you use any (external) support or nursing services in 2014? 1 2 3 4

– – – –

Yes, for free (e.g. help of a neighbor, family member, etc.) Yes, some form of supported service (charity, local government, etc.) Yes, we paid the market price No GO TO 32 9 – DK/NA X –

MORE THAN ONE ANSWER IS POSSIBLE

Questions 30 – 31: IF PREVIUOS QUESTION CODE 1, 2 OR 3 (Yes, we used an (external) caretaking or nursing service) 30. On average how many hours of (external) support or nursing services did you use per week? ......……………..……. hours/week 999 – DK/NA

X –

31. IF THEY PAID FOR THE SERVICE: How much did you pay per hour? Amount (net)

a. Supported service b. Market price

DK/ NA

………………….HUF

9

X

………………….HUF

9

X

B. RESIDENTIAL REAL ESTATE AND PROPERTY I will now ask you questions about your housing circumstances. 32. On what grounds do you live in this property? 1 2 3 4

– – – –

As owner As tenant Using it free of charge Other (please specify): ………………….……………

9 – DK/NA

X –

IF OWNER(S) OR USING THE APARTMENT FREE OF CHARGE: previous question CODE 1 OR 3.

33.

If you were renting this property at market price, how much rent do you think you would be paying for it? ......……………..……. HUF/month 9 – DK/NA

X –

34. This property is … 1 2 3 4

– – – –

owned by the local government privately owned official residence Other (please specify): ………………….……………

9 – DK/NA

X –

60

35. How many square meters of floor space do you have (balcony, garage, basement excluded)? ......……….……. m2 9 – DK/NA

X –

36. How many rooms are there? ……..…. rooms and …….. small rooms (under 12 m 2) 9 – DK/NA

X –

37. Is there a bathroom in the property? 1 – Yes

37.a. How many bathrooms are there? 1 – one 2 – two or more 9 – DK/NA X – 37.b. A bathroom… 1 – is used only by your household OR 2 – other households use it as well? 9 – DK/NA X –

2 – No 9 – DK/NA

X –

38. Is there a flush toilet in the property (either in the bathroom OR separate)? 1 – Yes

38.a. How many toilets are there? 1 – one 2 – two or more 9 – DK/NA X – 38.b. The toilet… 1 – is used only by your household OR 2 – other households use it as well? 9 – DK/NA X –

2 – No 9 – DK/NA

X –

39. How do you heat the property? Please answer with the help of answer sheet 2, marking the primary way you heat your property! 1 2 3 4 5 6 7 8

– Boiler heating several apartments – Circulating hot water heating (natural gas) – Individual convector OR tile stove (natural gas) – Controllable district heating (individual apartment’s consumption is measured) – Non-controllable district heating – Coal – Electricity – Firewood

9 – Other renewable energy, (please specify): ………………….………………… 10 – Other (please specify): ………………….…………… 99 – DK/NA X –

61

40. Is there a secondary way to heat the property? 41. 1 – Yes

40.a. What is the secondary way of heating the property Please answer with the help of answer sheet 2!

9

–

Other renewable energy, (please specify):

………………….……… 10 – Other (please specify): ………………….…………… 99 – DK/NA X – 1 – Boiler heating several apartments 2 – Circulating hot water heating (natural gas) 3 – Individual convector OR tile stove (natural gas) 4 – Controllable district heating (individual apartment’s consumption is measured) 5 – Non-controllable district heating 6 – Coal 7 – Electricity 8 – Firewood

2 – No 9 – DK/NA

X –

42. Do you heat the whole property in winter OR only a part of it? 1 2 3 4 5 6

– – – – – –

Yes, the whole property No, only about 3/4 of the property About half of the property About a quarter of the property They do not heat the property at all. Other (please specify): ………………….…………………

9 – DK/NA

X –

43. When was your building constructed? 1 2 3 4

– – – –

Before 1946 Between 1946-1980 Between 1981-2000 After 2000

9 – DK/NA

X –

44. What building material is the building made of? 1 2 3 4 5 6 7 8

– – – – – – – –

Brick Stone Manual building blocks Medium or large building blocks, cast concrete Precast concrete slab Wood Adobe, mud Other (please specify): ………………….…………………

9 – DK/NA

X –

62

45. What type is your building? 1 2 3 4

– – – –

House Building with 1-3 apartments Building with 4 or more apartments Other (please specify): ………………….…………………

9 – DK/NA

X –

46. Do you own a …

Yes

No

a.

Automatic washing machine?

1

2

X

b.

Land line phone?

1

2

X

c.

Plasma display TV set OR LCD TV set?

1

2

X

d.

DVD player?

1

2

X

e.

Dishwasher?

1

2

X

f.

Air-conditioning?

1

2

X

g.

Automobile (his/her own or by company that he/she can use for private purposes)? IF YES: How many?

pc

0

X

h.

Computer?

pc

0

X

i.

Internet access?

1

2

X

j.

Other residential property OR summer house?

1

2

X

IF YES: How many?

47. Do you own … Yes

No

DK/NA

a.

Debit or credit card?

1

2

9

X

b.

Shares?

1

2

9

X

c.

Debit account?

1

2

9

X

d.

Voluntary extra pension insurance?

1

2

9

X

e.

Life insurance?

1

2

9

X

63

C. THE HOUSEHOLD’S EXPENCES AND INCOME 48. How much do you spend in an average month on… No spending a.

Rent

0

b.

Common costs (in case the property is not owned by the local government)

0

Please include all expenses that are part of the common costs in this line! c. d.

In case the property is owned by the local government: Rent and common costs

…………………….HUF

DK/ NA 9

X

9

X

9

X

9

X

9

X

…………………….HUF 0

…………………….HUF

Trash collection In case of bimonthly billing please half the invoiced amount.

0 …………………….HUF

If it is included in common costs, please add it to line b. e.

Monthly amount

Water and sewer In case of bimonthly billing please half the invoiced amount.

0 …………………….HUF

If it is included in common costs, please add it to line b. f.

electricity

0

…………………….HUF

9

X

g.

natural gas

0

…………………….HUF

9

X

h.

other heating costs

0

…………………….HUF

9

X

i.

If there is district heating OR a boiler heating several apartments: hot water expenses, heating expenses

0

…………………….HUF

9

X

j.

Housing expenses altogether

0

…………………….HUF

9

X

49. How do you pay your electricity bills? 1 2 3 4

– flat rate (paying the same amount every month) – paying for the actual monthly use – they don’t pay – Some other way, (please specify): ………………….…………………

9 – DK/NA

X –

50. How do you pay your natural gas bills? 1 2 3 4

– – – –

flat rate (paying the same amount every month) paying for the actual monthly use they don’t pay Some other way, (please specify): ………………….…………………

9 – DK/NA

51.

X –

IF PAYING FOR THE ACTUAL MONTHLY USE (questions 49 OR 50 CODE 2). Please estimate usage and costs in 2014! IF CANNOT ESTIMATE: How much was your highest electricity/heating bill in 2014?

64

Estimated yearly expenses in 2014

DK/ NA

…………. m3

9

X

………………….HUF

9

X

………………….HUF

9

X

…………. KWh

9

X

………………….HUF

9

X

………………….HUF

9

X

………………….HUF

9

X

9

X

9

X

9

X

a.

Natural gas usage

b.

Electricity usage

c.

Other heating costs

9

X

d.

In case of district heating: hot water expenses, heating expenses

9

X

DK/ NA

…………………….HF

IF CANNOT estimate yearly expenses

DK /N A

amount

………………….HUF

52. How much did you spend in the last month on… If expenses are not equally distributed among members of the household, how much is the share of the person with disability?

No spending

Monthly amount

Within this amount the

DK/ NA

share of the person living with disability

k.

Food?

0

l.

Transportation (including passes, tickets, gas, toll roads etc.)?

0

m.

Mobile phone (prepaid or monthly bill)?

0

…………………….HUF

9

X

n.

Land line phone bill?

0

…………………….HUF

9

o.

TV subscription?

0

…………………….HUF

p.

internet subscription?

0

…………………….HUF

q.

If they subscribe to a landline, TV, and internet access in package, price of package?

0

…………………….HUF

9

X

9

X

9

X

9

X

…………………….HUF

9

X

X

…………………….HUF

9

X

9

X

…………………….HUF

9

X

9

X

…………………….HUF

9

X

9

X

9

X

…………………….HUF

…………………….HUF

65

DK/ NA

…………………….HUF

…………………….HUF

…………………….HUF

53. How much did you spend in the last 3 months altogether on… If expenses are not equally distributed among members of the household, how much is the share of the person with disability?

No spending

Amount in past 3 months


DK/ NA

share of the person with disability

DK/ NA

a.

Drugs and medical products?*

0

…………………….HUF

9

X

…………………….HUF

9

X

b.

Physician, hospital care?*

0

…………………….HUF

9

X

…………………….HUF

9

X

c.

Psychologist, psychiatrist*

0

…………………….HUF

9

X

…………………….HUF

9

X

d.

Physical therapy (pl. physical therapist, masseur, etc.)*

0

…………………….HUF

9

X

…………………….HUF

9

X

e.

other health services (please specify): ………………………………..*

0

9

X

9

X

f.

washing detergent (and softener)

0

…………………….HUF

9

X

…………………….HUF

9

X

g.

cleaning detergents

0

…………………….HUF

9

X

…………………….HUF

9

X

h.

toiletries (soap, shampoo, etc.)

0

…………………….HUF

9

X

…………………….HUF

9

X

…………………….HUF

…………………….HUF

* Please add to lines a) – e) any gratuity money that was given.

54. How much did you spend altogether in the past 12 months on… How much of this went to meeting the client’s needs?

No spending

Amount in past 12 months


DK/ NA

share of the person with disability*

DK/ NA

p.

Property maintenance (getting things fixed, etc.)

0

…………………….HUF

9

X

…………………….HUF

9

X

q.

Automobile maintenance

0

…………………….HUF

9

X

…………………….HUF

9

X

r.

Medical appliances and equipment

0

…………………….HUF

9

X

…………………….HUF

9

X

* if cannot say, please divide the 12-month amount by the number of persons in the household.

55. Were there any significant expenses above those already mentioned involving the person with disability in the past 12 months? 1 – Yes 2 – No 9 – DK/NA

GO TO 56 X –

66

56. Please list products OR services that you spent on or in connection with your …………….. (NAME OF CLIENT) in the past 12 months! Please start with the most expensive product or service! How much did you spend on the product/service?

Name of product / service

Spent amount

DK/ NA

a.

…………………………………………………………………………

………………….HUF

9

X

b.

…………………………………………………………………………

………………….HUF

9

X

c.

…………………………………………………………………………

………………….HUF

9

X

d.

…………………………………………………………………………

………………….HUF

9

X

e.

…………………………………………………………………………

………………….HUF

9

X

D. THE HOUSEHOLD’S INCOME

57. Do you conduct any agricultural activities? (A vegetable garden or a couple of chickens included.) 1 – Yes 2 – No 9 – DK/NA

GO TO 60 X –

58. Do you produce to sell too? 1 – Yes 2 – No 9 – DK/NA

X –

59. What percentage of the household’s food needs do you produce for yourselves? 1 – at leas half 2 – Less than half, but more than a quarter 3 – Less than a quarter 9 – DK/NA

X –

60. How much money do you think you saved by producing your own food…

Amount saved

DK/ NA

a.

In the past 3 months?

………………….HUF

9

X

b.

Last year (2014)?

………………….HUF

9

X

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61. How much is your monthly net (without taxes, insurance etc.) income? ........................................ HUF/month 8 – M 9 – DK/NA

01 02 03 04 05

– – – – –

60.a. Would you tell me which category your salary falls into in answer sheet 3 ? 20 thousand HUF, OR less 21 - 40 thousand HUF 41 - 70 thousand HUF 71 - 100 thousand HUF 101 - 150 thousand HUF

06 – 07 – 08 – 09 – more 88 – X –

151 - 200 thousand HUF 201 - 300 thousand HUF 301 - 500 thousand 500 thousand HUF or M

99 – DK/NA

X – 62. All in all, how much is the monthly net (taxes and contributions excluded) income of your household (including your personal income)? IMPORTANT: Besides all regular wages, please also include all welfare support (including carer’s allowance, disability allowance, social support, emergency benefit, and housing support); family allowance, pension (old age, widow(er)’s, and disability), income from casual work (done even for one day), supported employment, and other income from irregular work, as well as financial help from other household and alimony. ....................................... HUF/month 8 – M 9 – DK/NA

01 02 03 04 05

– – – – –

61.a. Would you tell me which category your income falls into in ANSWER SHEET 3+? 20 thousand HUF, OR less 21 - 40 thousand HUF 41 - 70 thousand HUF 71 - 100 thousand HUF 101 - 150 thousand HUF

X –

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06 – 07 – 08 – 09 – more 88 – X –

151 - 200 thousand HUF 201 - 300 thousand HUF 301 - 500 thousand 500 thousand HUF or M

99 – DK/NA

E. INDEBTEDNESS AND FINANCIAL DEPRICVATION 63. Has it happened to you in the past 12 months that you were not able to pay for any of the following for lack of funds…

Yes

No

n/a, in the last 12 months there were no such expenses, installments

DK/ NA

a.

Rent

1

2

0

9

X

b.

Mortgage payment

1

2

0

9

X

c.

Common costs

1

2

0

9

X

d.

Utility bills

1

2

0

9

X

e.

Installment on product bought on credit

1

2

0

9

X

f.

Installment in some other loan (taken out either from a financial institution or a private person)

1

2

0

9

X

64.

IF IN ANY LINE OF QUESTION 63 CODE 1 How much is the total amount of late payment or non-payment in the last 12 months you mentioned in question 63? ........................................ HUF/year 8 – M 9 – DK/NA

63.a. Can you tell me the amount per month?

………………………………… HUF/month 88 – M

99 – DK/NA X –

65. Let’s say you have a larger unexpected expense. Is your household capable of covering such an expense out of your savings? 1 – Yes 2 – No 9 – DK/NA

GO TO 66 X –

66. What is the largest unexpected expense that you could cover our of your savings? ......…………………….……. HUF 9 – DK/NA

X –

67. Can you afford to… Yes

No

DK /N A

o. … go on holiday once a year for at least one week?

1

2

9

X

p. … eat meat at least every other day? (or the equivalent for vegetarians)

1

2

9

X

q. … heat your home properly?

1

2

9

X

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68. Financially, do you think, you… 1 2 3 4 5

– – – – –

live without problems make ends meet by careful budgeting hardly make ends meet on your monthly income have serious difficulties month to month OR live in depravation?

9 – DK/NA

X –

Thank you for contributing to the success of our research by answering our questions! END OF INTERVIEW: ...... hour ...... minute Thank you for your work!

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New dimension in social protection towards community based living Project No. VP/2013/013/0057 “HEAD OF INST IT UTION” ONLINE QUEST IONNAI RE 2015

TÁRKI Social Research Institute (TÁRKI) was commissioned by the Equal Opportunities of Persons with Disabilities Non-profit Ltd. (FSZK) and the Hand in Hand Foundation to carry out a survey among people with disabilities. We would like to ask you for your assistance in our research. As part of our research we will interview people with disabilities, their carers, managers of residential institutions and group homes, as well as private households using structured questionnaires.

The aim of our research is to collect information about the life quality of people with disabilities, their living conditions, the quality of services available in their care, as well as to learn about their everyday lives. TÁRKI will handle all data collected during the research confidentially and guarantee that all information will be processed anonymously through statistical methods, i.e. respondents will not be identifiable by name in any research paper based on the survey. Data collected during the survey serve only scientific purposes. Participation in the survey is voluntary. Please help us in our research by answering the following questions.

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Please fill out the questionnaire with regards to 2014! 1. Name of institution:……………………………………………………………………. 2. Maintained by: - state, (please specify)……………………………………………………………………... - owned by the local government, (please specify)………………………………………………………… - nonprofit, NGO, (please specify)………………………………………………………….… - church, church institution, (please specify)……………………………………………….. - Other (please specify)………………………………………………………………………. 3. Please mark with X which of the following institutions are under your management? X

Premises

Care institution for people with intellectual disability Rehabilitation institution for people with intellectual disability Group home for people with intellectual disability Rehabilitation home (Temporary home) for people with intellectual disability Nursing home for psychiatric patients Rehabilitation institution for psychiatric patients Rehabilitation home (Temporary home) for psychiatric patients “Mixed profile” (people with intellectual disability and psychiatric patients) nursing home “Mixed profile” (people with intellectual disability and psychiatric patients) rehabilitation institution other social welfare service, (please specify)……………… other social welfare service, (please specify)……………… other social welfare service, (please specify)……………… other social welfare service, (please specify)……………… other social welfare service, (please specify)……………… 4. FROM THIS POINT ON ONLY FILL OUT THE QUESTIONNAIRE WITH REGARS TO ……………………………….., PLEASE!

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5. Number of residents and their main data at the end of 2014 In total:

No. of people

By gender Male Female By age group 17 years old or younger: 18-39 years old: 40-59 years old: 60 years old or older: By education Less than 8th grade 8th grade of Elementary School High school graduate Post High School degree If the institution has a “mixed profile”: No. of people with intellectual disabilities No. psychiatric patients If there is care for people with intellectual disabilities No. of people with mild intellectual disabilities No. of people with moderate intellectual disabilities No. of people with severe intellectual disabilities, or multiple disabilities No. of people under guardianship in total: Out of which: partial restriction on capacity to act complete restriction on capacity to act supported decision making

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STAFF 6. Please give us information on your employed staff (on December 31, 2014). If an employee works for another institution as well (e.g. the head of the institution), please mark his/her working hours for your institution! Job

No. of persons

No. of people working full time

Professional areas Head of institution Head of department/ deputy head of institution Financial officer Head nurse Development teacher Nurse Carer/social worker Social welfare and mental hygiene professional Social welfare administrator, / client manager Physical therapist Physician Psychiatrist Employment coordinator (accredited employment) Rehabilitation consultant (accredited employment) Rehabilitation mentor (accredited employment) Help (accredited OR supported employment) other professional job, (please specify):…………………………. other professional job, (please specify):…………………………. other professional job, (please specify):…………………………. other professional job, (please specify):…………………………. Total professional jobs Financial, technical, administrative jobs

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No. of people working part time (persons/…hours/week)

No. of people with qualifications for the job they are doing

Helping (manual) jobs 7. Were there any people in employment above the permanent staff on December 31, 2014? No Yes 7.a. If Yes, how many people and for how long: No. of persons

Length of employment (week)

Working hours/week

Workfare participants Volunteers Revenues 8. Revenues in 2014: HUF State operating subsidy: -

Normative grant

-

Extra church subsidy

-

Operating subsidy by tender

-

Supplementary wages

-

Other state subsidy (not included above) In total:

Clients’ payments: - Personal fee -

Mandatory fee

-

other payments, (please specify):……………… In total:

Maintenance contribution, (please specify)……………. Other revenues: - Operating subsidy by tender (non-governmental) -

Property management, income from organized event

-

cash donations

-

foundation grants

-

other (not included above) (please specify): ………………….. In total:

Value of non-pecuniary contributions : In total:

75

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EXPENDITURES 9. How much was the institution’s overhead in 2014? ……….. HUF/person/month 10. How much was the institution’s reimbursement in 2014 (balance of overhead and normative grant)? ……….. HUF/person/month. 11. For the purpose of our research we have grouped expenditures into three main groups: housing expenses, payroll expenses, and the institution’s general maintenance expenses. The reason for this is so that we can compare the expenses of people living in institutions with that of those living in families. Please fill out the three columns (payroll, service, and material expenditures) of the table below! (For example, if you do the laundry within the institution, fill out the payroll and material expenditures columns, if you use an outside service, fill out the service expenditures column.) Please mark whether the amounts contain VAT! Yes, they contain VAT No, they do not contain VAT → if they do not contain VAT, please include VAT in a separate row!

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Expenditures in 2014 Payroll expenditures (net amount, without taxes and contributions)

Material expendi tures

Service expenditur es

In total

HUF Housing expenditures: Please include all gross payroll expenditures for helping (manual) jobs, as well as service and material expenditures related to housing. Utilities (natural gas, electricity, water and sewer, trash collection) Communication services Maintenance services Laundry and cleaning (including detergents, and related payroll and/OR service expenditures) Travel (including fuel costs, and related payroll and/OR service expenditures) Catering (including shopping for food, and related payroll and/OR service expenditures) Other expenditures related to housing Tax and contributions burden on employer VAT on purchased products or services In total: Human services expenditures Nurses Carers/social workers Social welfare and mental hygiene professional Social welfare administrator, / client manager Physical therapists Physicians Psychiatrists Drugs other expenses related to human services (not including payroll, tax and contributions expenditures related to the maintenance of the institution)

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Tax and contributions burden on employer VAT on purchased products or services In total: The institution’s general maintenance expenses Including: gross payroll expenditures on financial, managerial, technical (non-manual) staff, as well as purchased services and material expenditures related to the maintenance of the institution. If there are employees working in the positions below for another institution as well, please mark their gross payroll expenditures for your institution only! Payroll expenditures related to the management of the institution (financial, administrative, technical positions) Taxes and contributions on salaries related to the management of the institution. Stationary, forms, journals other purchased services and material expenditures related to the maintenance of the institution VAT on purchased products or services related to the maintenance of the institution In total:

12. Are there other jobs in the institution that are not on the budget (e.g. jobs done by voluntaries) but save money for the institution? If so, what are they, and in your estimation how much money did they save for the institution in 2014? other jobs workfare participants volunteers Voluntary work done by those living in the institution Other (please specify): ……………….

Estimated amount of funds saved (HUF)

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EMPLOYMENT 13. Please mark how many people for how many hours were employed in your institution (OR outside the institution) in the following way in 2014?

Total No. of persons

No. of persons employed in the institution

Work rehabilitation

Working time (Out of the total): 8 hours

7 hours

X

Developmentpreparatory training

6 hours

5 hours

X

X

X

X

4 hours

Accredited employment (please mark separately the accredited hours) 14. Was there any work therapy in the institution in 2014? No Yes 14.a No. of people in work therapy by main types of activity (e.g. kitchen work, etc.) Type of activity

No. of people

Do they receive any rewards for their work

hours/day (if a record is kept)

15. If there were any people working in supported employment, please mark expenditures and revenues! Nobody worked in supported employment. Yes, there were people working in supported employment  15.a Revenues from supported employment in 2014: type HUF Employment support Sales revenue other (please specify) ………….. Total revenue

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15.b Expenditures on supported employment in 2014: type Work rehabilitation fee Payroll expenditures on development or preparatory trainings Taxes and contributions development or preparatory trainings employment coordinators’ payroll expenditures Taxes and contributions on employment coordinators’ salary Utilities Material expenditures Accumulation, tangible assets Maintenance other services VAT Total expenditures

HUF

16. If anyone was employed in accredited employment (on the site of the institution), please give us information on the expenditures and revenues that resulted from it! Nobody was employed in accredited employment Yes, there were people working in accredited employment  16.a Revenues from accredited employment in 2014: Type HUF Work rehabilitation support Job creation support Sales revenue other (please specify) ………….. Total revenue 16.b. Expenditures on accredited employment in 2014: Type Payroll expenditures on transit employment Payroll expenditures on long term employment Taxes and contributions on mentors, consultants, and helpers Payroll expenditures on development or preparatory trainings Taxes and contributions on rehabilitation mentors’, consultants’, and helpers’ salaries Utilities Material expenditures Expenditures on purchasing (low value) material assets Maintenance other services VAT Total expenditures

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HUF

17. a. Please estimate the market value of the real estate where your clients are cared for. ……………….. HUF 17.b. If you are unable to estimate its value, please choose from the following categories: 15 million HUF or lower

Between 75 million and 100 million HUF



Between 30 and 50 million HUF



200 million HUF or more I do not know

18. If you were renting the real estate, could you please estimate how much the monthly rent would be? …………………HUF I do not know Thank you for contributing to the success of our research by answering our questions!

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