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Community Social Support for People with Autonomy Support Needs: The Role of Institutional Protection in Spain

Authors:

David González Casas ,

Teaching and research staff from the Faculty of Social Work at the Complutense University of Madrid (UCM), ES
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Esther Mercado García,

Teaching and research staff from the Faculty of Social Work at the Complutense University of Madrid (UCM), ES
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Joaquín María Rivera Álvarez,

Teaching and research staff from the Faculty of Social Work at the Complutense University of Madrid (UCM), ES
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Lorena Patricia Gallardo Peralta

Teaching and research staff from the Faculty of Social Work at the Complutense University of Madrid (UCM), ES
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Abstract

People with disabilities face social barriers on a daily basis that cause high levels of social exclusion and isolation. As a result, this study analyses the support needs of people with disabilities under institutional protection in relation to community social support. To this end, a correlational cross-sectional study with a mixed methodology was used. A total of 125 people participated in the study. The results indicate that community integration and participation are areas in which the protagonists find severe limitations while social support in formal and informal systems seems to be satisfactory. In addition, the type and location of the residential centre are shown as determining variables.

How to Cite: González Casas, D., Mercado García, E., Rivera Álvarez, J.M. and Gallardo Peralta, L.P., 2022. Community Social Support for People with Autonomy Support Needs: The Role of Institutional Protection in Spain. Scandinavian Journal of Disability Research, 24(1), pp.210–223. DOI: http://doi.org/10.16993/sjdr.910
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  Published on 25 Jul 2022
 Accepted on 05 Jul 2022            Submitted on 21 Feb 2022

Introduction

The aim of any life plan is to achieve quality socio-personal development, maintain a stable social support network, safeguard a certain level of freedom to make decisions based on one’s own beliefs and/or convictions and, in short, be able to experience personal growth based on one’s own experiences (Lippold & Burns 2009). Although the aforementioned statements could be understood as maxims to be achieved by society as a whole, for people with disabilities, they become utopian and not are considered as real possibilities (Temple et al. 2020).

In recent decades, despite the fact that there has been an unquestionable improvement in the treatment and socio-legal recognition of people with disabilities as regards dignity and inclusion (Heikkilä, Katsui & Mustaniemi-Laakso 2020), it must be highlighted that even today they are still put in a social position that makes it perceptibly difficult to lead a full life. Although people with disabilities demand full citizenship status, they are held back by two fundamental pillars: stigma and overprotection (Waldschmidt & Sépulchre 2019).

As regards the inclusion of people with disabilities, social barriers can be understood as the main source of limitation. Consequently, full and effective participation and inclusion in society must be the main aim of work with (and not for) this particular social group. This objective is the backbone of the UN Convention on the Rights of Persons with Disabilities (CRPD), the international human rights treaty intended to protect the rights and dignity of people with disabilities.

Professional, legal and academic practices still continue to displace people with disabilities in ways akin to exclusion and/or marginalisation, which repeatedly denies them the right to participate in their own development. Therefore, scientific responsibility and ethics must be directed towards improving the quality of life of people with disabilities by prioritising knowledge about what they think, what they feel and what they need (Mladenov 2016). Everything mentioned so far becomes even more evident and essential when it comes to people with autonomy support needs who are under institutional protection. In addition to the socio-personal constraints already mentioned, such individuals also have to deal with the label of ‘presumed incapacitated’.

Institutional protection must become the means through which people with autonomy support needs can develop a free and full life and count exclusively on indispensable support to be able to exercise their rights as citizens (Bantekas, Stein & Anastasiou 2018).

Social support to help people with autonomy support needs exercise their rights

In the field of psychosocial research and intervention, there is a determining parameter that links available resources and existing—or potential—stressors. The availability of social resources is directly related to the ability of individuals to successfully cope with stressful life events and thus be able to develop socially and personally (Gracia, Herrero & Musitu 2002).

The classic definition by Lin (1986), which is still valid today in the understanding and study of social support, states that social support should be understood as ‘the perceived or actual instrumental and/or expressive provisions supplied by the community, social networks and confiding partner’ in both crisis and everyday situations (12).

Numerous studies have addressed the impact of social support on the well-being of people with disabilities (Barrón & Sánchez 2001; Lippold & Burns 2009; Scott & Havercamp 2014; Emerson et al. 2021). The shared element in these studies is that they all question scientific study patterns in the field of disability. Lenior et al. (2001) highlight that science has primarily been concerned with evaluating positive disability-related symptomatology.

The social position and identity of any individual determines their level of positive interaction with their environment and, therefore, their ability to build a stable social fabric that, in turn, has an impact on their ability to cope with stressful events (González & Mercado 2019).

To achieve an optimal quality of life, social barriers that hinder an individual’s perception of their sense of belonging and personal growth must be eliminated. It is important to emphasise the urgent need to socially include people with disabilities by reclaiming their right to self-determination, favouring full participation and recognising the unquestionable value of diversity (Biklen 2000). According to Sempere (2008, 38), this can only be achieved by taking into account that self-esteem, recognition, belonging, protection, self-realisation, personal freedom and participation in social tasks are all basic needs, and if they are not satisfied, then living a full life is not possible.

From this perspective, it is the social environment itself that limits and defines the socio-personal needs of people with disabilities (Bystritsky et al. 2001), given that their main problem does not lie in their supposed inability to adapt to the demands of contemporary society, but rather in society’s complete failure to respond to the natural needs of a diverse society.

People with autonomy support needs: Legal framework and institutional protection

Social barriers and the CRPD

The CRPD was created as an international instrument to protect the enjoyment of human rights and fundamental freedoms of people with disabilities (Sastre Campo 2012). Given that the social identity of people with disabilities in the contemporary social model prevents their full development and relegates them to a space of ostracism, infantilisation and exclusion, it would seem obvious—beyond the legal importance of the CRPD—to demand the implementation of preventive mechanisms from the social sphere to achieve proper and full inclusion of people with disabilities (Stein 2017).

A society that claims to be inclusive must ensure that its citizens have equal access to enjoy their inherent rights as human beings (Perrin 2019). Only under this premise can the fundamental principle linked to dignity be respected and a fairer and more egalitarian society built (Mégret 2008).

Equal recognition as persons before the law in the CRPD

Article 12 of the CRPD establishes the obligation to remove obstacles that hinder people with disabilities from enjoying their full potential. To this end, legal processes that determine or modify the capacity of individuals on the basis of their disability must be adapted to ensure compliance.

The CRPD places special emphasis on the recognition of the full capacity of people with disabilities to exercise their rights on an equal basis, regardless of their degree, level or type of disability (Szczupal 2017). It calls for the elimination of any process that places the need to demonstrate standardised socio-personal competences on people with disabilities to enjoy full capacity. It is the social and legal systems that must adapt to the intrinsic particularities of each individual (Barranco, Cuenca Gómez & Ramiro 2012). This breaks with the classic assumptions that associate (intellectual) disability with a lack of capacity to govern oneself and extols the need to implement a system of individualised support that does not entail—in any case whatsoever—the annulment of an individual’s will.

In accordance with the aforementioned, the aim is to eliminate the obstacles that limit an individual’s ability to make their own decisions, and in cases where an individual’s functional limitations hinder their self-government, a support system must be established—which could be provided by a third person and/or institution, as in the case of this study—to ensure the full exercise of their rights (IDA 2018). In cases where the assistance of a third person is needed, this person must provide individualised support ‘tailored to the person’s circumstances’, as stated in Article 12(4).

Institutional protection and participation in community life

The exercise of institutional protection in Spain can be performed by legal entities, providing they are not for profit and their objectives include the care of people with disabilities. Institutional protection for individuals residing in care centres for people with disabilities and/or care homes for the elderly has the obligation to support, encourage and protect people with support needs. Furthermore, it must ensure that they have access to equal enjoyment of their rights. Therefore, its function must revolve around the duty to have a favourable impact on the quality of life of institutionalised individuals, for which there must be a comprehensive plan in place for inclusion in community life (Verdonschot et al. 2009).

The participation of people with disabilities in their community environment is framed within the right to inclusion and participation set out in the CRPD. In this regard, General Comment No. 5 (2017) on the right to live independently and be included in the community, published by the Committee on the Rights of Persons with Disabilities, states the following:

The right to be included in the community … includes living a full social life and having access to all services offered to the public and to support services offered to persons with disabilities to enable them to be fully included and participate in all areas of social life. (4)

In response to this, the Spanish government recently passed Law 8/2021 of 2 June to reform civil and procedural legislation enabling people with disabilities to exercise their full legal capacity. The law explicitly states that institutional protection for people with disabilities must hinge on respect for the will and preferences of the person under protection and ensure that they can develop their own decision-making process (Art. 282). To implement the law, empirical evidence must be gathered that indicates potential needs in relation to the social support received by people with disabilities. This variable must be understood as a determining factor in the inclusion and full participation of people with support needs as well as a key mechanism to promote autonomy. Davy (2019) highlights that people’s autonomy is only possible through relationships, i.e., via support from and co-learning with other people.

Based on the above, the objective of this study is to analyse the perception and levels of community social support provided to those individuals assisted by the Asturian Foundation for the Care and Protection of People with Disabilities and/or Dependencies (FASAD) in care centres for people with disabilities or care homes for the elderly. It also aims to assess the level of relationship and correlation between the independent variables (centre location and type of centre) with the dependent variable (community social support), taking into account the qualitative categories from the community social support analysis questionnaire.

Methodological Design

Social justification for the study

Based on the aforementioned theoretical development and prioritising the concept of social barriers as the main obstacle to achieving full inclusion of and participation by people with disabilities in society, we must reflect on the role of public administration. We need to consider whether this public service is fulfilling its role as the primary agent that guarantees equal access for people with disabilities to civil, political and economic rights and whether civil protection mechanisms are based on the needs expressed by service users (Thomas & Woods 2003).

The study was created in response to the urgent need to give a voice to people who have been silenced, in other words, to investigate with and not for people with disabilities (Walmsley 2005). Analysing the needs, fears, feelings and expectations of the protagonists of the study responds to the ‘emancipatory’ research paradigm (Truman, Mertens & Humphries 2000) in which the main objective of the research is to take action against the observable inequalities to which ‘oppressed’ groups are subjected.

Participants

A total of 131 people in the care of the FASAD who, at the time of the study, were permanently residing in care centres for people with disabilities or in care homes for the elderly were selected. The reasons for the selection were as follows:

  • The possibility of access to the sample
  • Ongoing professional intervention with the study population

Of the 131 people selected, 125 agreed to participate in the research, and 6 declined. Despite the fact that the theoretical assumptions are based on research with people with disabilities—all the protagonism is given to the subjective perception of the population under study—the study also contemplated the possibility that a trusted professional with direct contact could answer on behalf of those people who, due to their physical, mental or sensory limitations, could not do so in the first person. Based on the above, 105 people answered in the first person, and in 20 cases, a trusted professional answered on their behalf. It should be noted that only 55 interviews were selected for the qualitative analysis, which introduced variables that were insufficient or not included in the quantitative material. Each interviewee or interview was assigned a chronological [P] order to respect their anonymity.

Due to the characteristics and particularities of the population under study and the difficulties in accessing the sample, we performed a correlational cross-sectional study in which the choice of the sample is based on availability.

Regarding the socio-demographic data of the sample, of the 125 participants, 60 were women (48%) and 65 men (52%) with an average age of 57. In addition, 75 people resided in care centres for people with disabilities (60%), while 50 resided in care homes for the elderly (40%). With regard to location, 63 people lived in urban areas (50.4%), while 62 (49.6%) lived in rural areas. To perform the aforementioned stratification, we used the official European statistics standard (Eurostat), which states that urban environments must have a minimum of 5,000 inhabitants and a density of 300 inhabitants per km2 (Goerlich & Cantarino 2015). Lastly, 18% of the participants were living with a dual disability (intellectual and mental health problems) and 82% an intellectual disability.

It should be noted that all the participants share the same homogeneous criteria, i.e., people with autonomy support needs who present an intellectual disability (of which a small number also have other problems derived from mental health issues) whose institutional protection falls to the FASAD. Community social support, as a determining factor in implementing the precepts included in the CRPD and Law 8/2021 of 2 June, must be detected and analysed in the whole population with support needs, independently of age, place of residence and the type of centre where they reside. Participation and integration as well as social support provided by all areas of the community are general mandates that cannot be restricted by socio-personal conditioning. Therefore, actions aimed at improving community social support must be implemented for the entire population with support needs by determining the potential general and particular needs of the participants arising from the type of centre and their place of residence.

Design

A mixed methodology was used to make it easier to obtain analytic induction with greater explanatory weight and act as a buffer against the possible deficits generated by separate quantitative and qualitative methodology (Greene 2006). The material used to collect quantitative data may not collect all the variables present in the socio-personal development of people with support needs, i.e. their knowledge, fears, needs and/or feelings. Therefore, these aspects need more in-depth investigation to obtain a more accurate analysis of the phenomenon under study. Zapparoli (2003) highlights that no method is absolutely satisfactory and exclusive; hence, implementing diverse methodologies brings us closer to the truth and understanding of the object of study.

The implementation of both types of methodology was performed in parallel (Pole 2009); that is, quantitative and qualitative data were collected at the same time during the first-person interviews conducted by the researchers. Based on the above, the aim is to highlight the needs expressed by the people with autonomy support needs themselves, triangulating the data from the information collected (Vallejo & Finol 2009) to be able to efficiently address the objectives of the study. To this end, we must bear in mind that the research was performed with a population group with very specific social, personal and legal characteristics, which has been the focus of very limited research. To develop the study based on the parameters set, the interviews were conducted in first person with visits to more than 37 care centres and/or care homes between September 2017 and August 2018. The ‘opinion’ questions were aimed at determining what people with disabilities think about and how they assess the phenomenon under study, and the ‘contrast’ questions were aimed at understanding the meaning ascribed by those who participate in the study (Patton 2017).

To perform the study, an agreement was signed with the Department of Social Welfare from the Principality of Asturias and the head of care at the FASAD. During the development of the study and the analysis of the data obtained, all ethical aspects relating to research with people with disabilities were scrupulously respected.

Study variables and materials

As there are numerous instruments and/or questionnaires linked to the analysis and evaluation of social support, the community social support questionnaire developed by Gracia, Herrero and Musitu (2002) was used. This questionnaire was used because it is the only one that analyses all the dimensions involved in the social support provided by a community to an individual. Moreover, the community social support questionnaire conforms to CRPD guidelines in relation to integration, community participation and the formal and informal support that must be provided to people with disabilities to freely exercise their full citizenship rights.

The social support questionnaire is a self-report tool that assesses the perception of community social support. It comprises 24 items on a Likert-type scale with five response options (1 = strongly disagree and 5 = strongly agree). The questionnaire is structured in four dimensions: community integration (5 items, e.g., ‘I identify with my neighbourhood or community’); community participation (6 items, e.g., ‘I participate in some social or civic group’); social support in formal systems (4 items, e.g., ‘I would turn to these organisations if I needed support’); and social support in informal systems (9 items, e.g., ‘I would find someone to listen to me if I needed support’).

Regarding reliability, the questionnaire presents a Cronbach’s alpha coefficient of 0.879 in scale 1, community integration and participation; 0.856 in scale 2, social support in formal systems; and 0.845 in scale 3, social support in informal systems.

As already mentioned, by only using quantitative methods, the study may not collect all the relevant questions for and answers from the interviewed population in relation to the proposed variables. As a result, the interviews were conducted in a face-to-face format to enable the collection of qualitative data provided by the respondents that was not collected in the quantitative data. To this end, spaces were provided for the collection of specific information in the questionnaire itself in each of its four dimensions (explained in the previous paragraph) to collect the participants’ specific opinions on each of the dimensions analysed (Table 1).

Table 1

Study variables.


Community-Based Social Support
Community integration
Community participation
Social support in formal systems (social services, health care centre, public psychological care, etc.)
Social support in informal systems (non-profit organisations, faith-based organisations, organisations for people with disabilities)
Community social support questionnaire by Gracia, Herrero and Musitu

Personal and Environmental Factors
Type of centre (1 = care centres for people with disabilities; 2 = care homes for the elderly; 3 = care centres for people with disabilities; 4 = care homes for the elderly)
Centre location (1 = urban; 2 = rural)
Data collected ad hoc during the interview

Variables Not Collected in the Questionnaires Space provided in the questionnaires for the collection of qualitative data according to the four dimensions present in the community social support questionnaire

Source: The authors.

Analysis

Descriptive analyses were performed to determine the characteristics of the population under study in the areas that comprise community social support as well as the possible differences that might exist according to the variables centre location and type of centre. To homogenise the results of each dimension and, therefore, facilitate their comparison and understanding, the descriptive data (general descriptive data for each dimension and comparison of means according to the variables indicated) is expressed in percentiles. In addition, an analysis of mean differences was performed for the variables centre location and type of centre using the chi-square statistic and the Pearson correlation analysis to assess the relationship between the dimensions included in community social support and the variables centre location and type of centre.

Lastly, the information provided during the interviews was transcribed for the qualitative data analysis. The texts were segmented into quotes and aggregated according to the dimension to which they belong (1 = community integration; 2 = community participation; 3 = social support in formal systems; and 4 = social support in informal systems) (Miles & Huberman 1994).

Results

Quantitative results

Here we describe the respondents’ own perception of the levels of community social support. The variable community social support is divided into four categories which correspond to community integration, community participation, social support in informal systems and social support in formal systems. To analyse the aforementioned categories, the total results were transformed into percentiles to facilitate their understanding.

The data from the analysis of the aforementioned variable (Table 2) show that all areas obtain values below 50, with the categories community integration and community participation showing values lower than those obtained for social support in informal systems and social support in formal systems. The data show how the population under study has a very negative perception of the levels of participation in their community.

Table 2

Descriptive statistics for community social support.


N MINIMUM MAXIMUM MEAN SD

Community integration 125 5 47 31.06 4.80

Community participation 125 6 41 20.25 3.30

Social support in informal systems 125 10 64 48.44 12.77

Social support in formal systems 125 4 61 44.75 14.87

N 125

Having provided general descriptions for each dimension, below is a description of the potential differences that exist in each dimension analysed according to location and type of centre where the participants reside (Table 3).

Table 3

Means of the categories of community social support as a function of the variables type of centre and centre location.


COMMUNITY INTEGRATION COMMUNITY PARTICIPATION SOCIAL SUPPORT IN FORMAL SYSTEMS SOCIAL SUPPORT IN INFORMAL SYSTEMS

Type of centre

Care centre for people with disabilities 36.6 21.7 50.1 47.3

Care home for the elderly 26.6 17.1 42.34 40.7

Centre location

Urban 37.5 21.82 50.25 47.85

Rural 27.6 18.75 46.74 41.36

The results indicate that the variable type of centre shows tangible variations in practically all the study areas. People who live permanently in care centres for people with disabilities show higher values in all categories than people who live in care homes for the elderly. Similarly, people living in urban environments show higher values in all dimensions of the analysis than people living in rural environments.

Having observed the differences in the descriptive data, an analysis was performed using the chi-square statistic to determine whether the aforementioned differences were significant (Table 4).

Table 4

Chi-square for the variables centre location and type of centre.


CENTRE LOCATION TYPE OF CENTRE



VALUE SIG. ETA VALUE SIG. ETA

Community integration 48.53 0.000 0.604 45.67 0.001 0.623

Community participation 42.44 0.030 0.357 37.48 0.026 0.497

Social support in formal systems 35.52 0.006 0.530 36.91 0.021 0.543

Social support in informal systems 34.84 0.016 0.527 41.76 0.026 0.578

The results indicate significant differences depending on the centre location in all the dimensions analysed. Furthermore, the Eta data indicate a high level of correlation in all dimensions, especially in community integration. Similarly, the results closest to the chi-square statistic indicate significant differences depending on the type of centre where the population under study reside, with the Eta showing an optimal degree of correlation between the variable and the dimensions studied.

Based on the results and taking into account the correlation and significance demonstrated for the variables centre location and type of centre in relation to community social support, a Pearson correlation analysis was performed to assess the degree of correlation between the dimensions analysed (Table 5).

Table 5

Correlation matrix.


1 2 3 4 5 6

1. Community integration 0.638** 0.463** 0.578** 0.382** 0.536**

2. Community participation 0.581** 0.626** 0.243** 0.228**

3. Social support in formal systems 0.663** 0.206** 0.243**

4. Social support in informal systems 0.245** 0.327**

5. Centre location 0.072

6. Type of centre

** Correlation is significant at 0.01 (bilateral).

* Correlation is significant at 0.05 (bilateral).

Analysing the results reflected in the correlation table, it can be seen that there is a significant correlation at 0.01 (bilateral) between all the areas included in the community social support dimension and the variables centre location and type of centre. The results indicate the existence of a strong correlation between all the variables analysed; that is, the areas that comprise community social support show a significant degree of correlation with centre location and type of centre. This indicates a high correlation between the dimensions studied; that is, in all the areas analysed—except for rights—there is an important level of correlation with the general levels (percentile) of quality of life.

Qualitative results

Community integration and participation

Within the four dimensions that comprise community social support, the two that showed the lowest percentiles (as indicated in the section relating to quantitative results) are community integration and participation. As already argued in the theoretical development, these dimensions are determining factors in the personal and social development of any individual. In this study, participants highlight the lack of social networks and relationships with people—with the exception of care professionals and users of the centre—in their environment:

I’m not from here, so I don’t know many people from the area. We don’t usually socialise with people from here … so I’m not very comfortable. (P.7)

I imagine that almost nobody knows who I am, except when we go out for a coffee, the people from the bar and the market, not much else. (P.17)

Well, the place is nice, and the people are nice, but I don’t know anyone outside the centre. (P.124)

When the participants refer to their feelings of belonging to the community, they highlight the lack of knowledge of the environment and the people who live there as binding factors. Care centres for people with disabilities and/or care homes for the elderly are often ‘watertight compartments’ for people in care and are where they perform all their daily activities. This relates to the phenomenon of ‘institutionalisation’ which the participants are subjected to. Environments that are considered ‘unfamiliar’ by users give rise to conflicting discourses which, on the one hand, praise the care provided by the centres and, on the other, question the isolation and lack of social relationships:

I’m very comfortable here, but of course, I’m not from here and people don’t know me, well, they know me from seeing me, but they don’t know who I am. (P.76)

I like it here, of course, but this is far from my home, well, my family’s home, and I don’t know anyone. (P.98)

In contrast, people who live in care centres and/or care homes close to their former place of residence perceive a greater and better integration in their community environment:

Yes, yes, people know me. I used to live in […] and of course, I see a lot of people from there. They ask me how I am. They tell me to take care of myself, they love me. (P.14)

They know me, I’m from nearby. I never liked talking to people, but when I go out, I do meet people. (P.11)

When reference is made to community participation, the respondents stress the limited possibility to find out about and/or participate in activities, organisations or groups outside the residential environment:

We don’t participate in anything in the area…. Sometimes we do activities, especially at Christmas, and people from outside come to see us…. I really like it when people come who are not from here. (P.60)

I like everything … politics, sport … but I hardly ever do those things outside the centre. I know who Rajoy [former prime minister] and the one with the ponytail [a former opposition party leader] are, I see them on TV, but I don’t talk about those things here. We talk a lot about football because I support Sporting [de Gijón] and a lot of people here are from Oviedo. (P.4)

With people from outside? There are some girls who take us for walks, but as far as I know we don’t do anything else outside. (P.90)

The respondents state that their social network outside the care centre and/or care home is practically non-existent and that the activities in which they participate, on most occasions, take place within the centre itself.

Given the scarcity of resources in the centres themselves and of the unequivocal difficulty in finding community participation resources for people with a specific profile such as that of the population under study, joint community actions should be sought to facilitate the full and inclusive participation of people with autonomy support needs. To achieve this, the involvement and collaboration of all the actors present in the community environment (town councils, associations, health care systems, social services, third sector entities, etc.) is essential.

Formal and informal social support

In relation to social support in formal and informal systems, the population under study has a generally positive perception, especially in relation to the support provided by the care centres and/or care homes where they live and also by the FASAD:

When I ask them, they do try to help me. I don’t usually ask for help and advice, but I think they would help me, when I’m sad and worried they help me. That makes me feel good. (P.55)

I think they would help me. I haven’t been to Social Services much…. I think I went for my pension … but for little else, they arrange everything for me from the centre. (P.58)

From the centre they make sure that I have everything … the basics, not everything, that’s fine, yes. (P.108)

They are my support, because I don’t have anyone else…. I would like to have more, but they are my support. I have to tell them if something happens to me, if not them, who? (P.123)

When I need to buy clothes, I tell them to ask FASAD, and they always say yes. (P.40)

Although, as already mentioned, the interviewees stated that they did not participate in community life, their perception of the possibility of finding help and/or support if they need it in associations or resources in their environment is positive:

Yes, yes, they help everyone. If I wasn’t here and I needed help I would definitely come. (P.111)

I went to Cáritas [a Christian charity] before, and they gave me clothes and stuff. They really helped me. (P.107)

The verbatim statements and transcribed excerpts were coded according to the four dimensions described in the areas outlined in the community social support questionnaire (Table 6).

Table 6

Variables reported in the qualitative analysis.


VARIABLES REPORTED BY PARTICIPANTS DIMENSIONS OF COMMUNITY SOCIAL SUPPORT TO WHICH THEY BELONG

1. Choice of activities 1. Community integration

2. Inclusive leisure 2. Community participation

3. Full identification with their environment 3. Community integration

4. Need for participation in activities in the environment and/or the community 4. Community participation

5. Formal support established by the FASAD 5. Social support in formal systems

6. Community exclusion 6. Community participation

The categories in the table indicate variables that are not present in the quantitative material. The variables most frequently mentioned by the respondents refer to the palpable need to feel part of the community, and not in a one-off or symbolic way but through the construction of a stable social support network that allows them to develop activities outside the care centres or care homes where they live. In relation to this, great importance is attached to leisure and, in particular, to leisure outside the usual residential environment that responds to their particular interests or preferences.

Lastly, the respondents positively value the support provided by the centres and the FASAD, understanding that they are sources of personal well-being and spaces in which to find help.

Discussion

The perception of people with autonomy support needs as regards community social support can be grouped into two large sections: on the one hand, the dimensions relating to integration and community participation and, on the other, the social support provided by formal and informal systems. This can be clearly explained by the fact that the dimensions relating to community integration and participation have strong social components that depend on the implementation of intervention plans linked to a social model of disability. Unfortunately, such plans have limited presence in the cultural schemes of contemporary society (Devlin & Pothier 2006). In turn, the dimensions relating to formal and informal social support are intertwined with the assumption held by the public administration about the care and protection of people with autonomy support needs.

The objective linked to the inclusion of people with disabilities and support needs cannot be achieved without the development of strategies linked to the full and effective participation of the group in community life, given that participation is recognised as a basic right by the World Health Organization (WHO) and the CRPD—which does not infringe on its legal implementation in Spain. Furthermore, considering that the people in this study have full rights as users of public resources and community spaces, listening to and valuing their needs, opinions and perceptions will efficiently contribute to transforming the services they use (Walmsley 2004). This has a clear explanation. If the preferences and wishes of people with autonomy support needs are taken into account at the beginning, then the way services function will inevitably change. Based on the argument thus far, community participation should be understood as a way to improve the protection and advancement of people with institutional support, given that an increase in social relationships has been shown to be a determining variable in the quality of life of people with disabilities (Anghel & Ramon 2009).

The results pertaining to social support in formal and informal systems are above average with respect to the dimensions pertaining to community integration and participation. These data indicate that residential centres, together with the institutional support provided by the FASAD, perform essential support work in which the population under study feels safe, cared for and, in short, that their basic needs are satisfied. Although this is extremely important, it still needs to be accompanied by actions that implement inclusive interventions with the community as essential methods in the creation of individualised care plans (Bigby & Wiesel 2011).

The variable type of centre proved to be a determining factor when analysing and conceptualising levels of community social support. The results closest to the chi-square statistic as well as the Pearson correlation table indicate a high level of correlation relationship between the aforementioned dimensions, with people who live in care centres for people with disabilities indicating a better perception in all the areas that comprise community social support. These data are similar to that of other studies, for example, Sáenz Murga (2018). Therefore, we can assume that the specialisation of services provided by specific care centres for people with disabilities leads to better adaptation to meet the social needs of the people in their care.

In relation to the variable centre location, the results are marked with respect to the community social support perceived by the respondents, with people residing in urban environments providing the most positive results in all areas of analysis. However, this is not in line with previous studies that argue that social support is stronger in rural settings (Tapia-Haro, Pérez-Mármol & Moreno Lorenzo 2016). Notwithstanding, we must take into account the particularities of the population participating in this study and, above all, the impossibility to freely choose the residential centre, which can lead to a greater feeling of isolation in environments with few community activities.

The collection of qualitative data made it possible to determine that the variable with the greatest incidence refers to the limited capacity to maintain a stable social support network. Given that the basis of inclusion is sine qua non to the right to form part of a community, it is not simply enough to reside and/or be in a community to feel included and participate (Bigby, Anderson & Cameron 2018). To this end, it must be acknowledged that it is not the responsibility of people with support needs to make huge efforts to adapt to the environment in which they reside but that the responsibility to create participatory spaces in which diverse capacities are respected and fostered must lie with the community itself.

In light of the above, support should be based on the obligation to provide specific assistance that favours the satisfactory inclusion and participation of people with disabilities in community life. To this end, the work performed at centres should form part of the mission to increase opportunities to participate for people with disabilities in their care as a determining factor in increasing their level of quality of life (Nahuelhual, Giaconi & Machuca 2017).

The respondents highlight the lack of opportunity to choose their place of residence, which means that on many occasions they do not identify with their surroundings. This casuistry must be approached from an emancipatory and inclusive perspective, given that residential resources are regrettably scarce and the support needs in many people are evident. Therefore, the work of institutional support must ensure that wherever people are they can enjoy the social and/or community support needed to enjoy a full social life. This should not be a question of the individual will of the centres themselves but to the fundamental right of people with disabilities, that should be universally reclaimed and defended, to participate and feel that they belong to the community (García-Canclini 1995; Díaz Velázquez 2010).

Closely linked to the variables mentioned thus far is the need to be able to enjoy inclusive leisure and free time that also respects individual preferences. People with disabilities often perceive that the leisure activities they attend are chosen by care professionals (Zijlstra & Vlaskamp 2005). According to Abraham et al. (2002), social support is associated with greater participation in leisure and free time activities, with overprotection being the cause of scientific and professional misconceptions about the group’s ability to make free and informed choices.

Lastly, the respondents attach particular value to the care received from the professionals in the centres where they live and from the FASAD. The ethics of care holds that it is paramount to conceptualise the professional-user relationship as something ‘more’ than a simple professional relationship. We must not forget that—on many occasions—people with disabilities do not have stable and positive family relationships, which means that their emotional references are to be found in the centres where they live. Good professional work must involve a warm, respectful and close relationship that allows residents to increase their levels of affective and emotional well-being.

Limitations

This study advances the understanding of the community social support required by people with autonomy support needs. However, it has some limitations that need to be highlighted to improve care for people with disabilities and/or support needs.

Owing to the size of the sample, it is not possible to make generalisations. This is despite the fact that all the respondents reside in residential care and a mixed methodology was used to provide the study with a greater capacity to describe and analyse the conditioning factors linked to community social support in people with autonomy support needs.

Regarding the research design, it would be advantageous to perform a longitudinal study analysing the impact of the implementation of intervention plans that promote community social support.

Competing Interests

The authors have no competing interests to declare.

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