Operation A: Needs, claims and entitlement (operations 3, Life-World 2)

Needs

This kind of mapping and in the context of accessing the resources is often termed needs assessment.

Needs are a paramount term in social work and social policy, as well as in general discourse. It not only lacks clarity but is also problematic because of its normative nature. Based on the biological proposition of homeostasis, it presupposes a lack, a deficit, which can easily be ascribed to an individual person, group or community rather than to a situation, social relationships or the system. In doing this, it is a devaluating mechanism and a misleading tool of action. Besides, it is normative in sense of prescribing the nature of what people need and the quantity of what they are entitled to. However, they implicitly express rights for some kind of welfare provision. In fact, the term of ‘needs’ mask the rights into a socio-biological given.

Illich (1992) historically deconstructs needs into desires or wishes on one hand and the necessities on the other. Desires meaning what somebody wants or wishes to do, to happen, while necessities are about social or material contingencies of what ought to be done, to happen. Rather than using concept of “needs” in order to integrate this dialectical double, “goals” can be used as a such integrative term in alternation with desire; thus stressing the volition and accumulation rather than predetermined state and the lack. The “needs”, however, will remain in use, for time being, albeit just as a technical term. 

The goals and desires might be directly placed on the map or deduced from its intricacies – contradictions, gradients etc. of the everyday life. Once identified and articulated they will be transformed into claims (applications, requests), which are to be placed in the system and eventually brought back to the claimer as entitlements or eligibility. However, the claims have to be evaluated, assessed, usually by experts and according to some rules. Once claim is granted, the claimer transforms from a claimer to a beneficiary, a recipient. The resource is to be integrated into his or her Life-World.

When this operation is about mobilisation of the (dormant) resources in one’s own Life-World it may still be about putting claims on others that share this Life-World, but it is also about participation, membership, and person’s contribution to a group, network or community. It is also about recovering the ground and instigating doing something in common good.

Claiming should not be seen as a selfish, egotistic action, just for one’s personal benefit. When it is about claiming from the public resources it is an act of “redistribution” and “re-appropriation” of a public goods into the common good, based on rights rather than needs. When claim is placed on the others in the community, it must be seen a creation of something that works for a common good.

When the claim is approved, sometimes formally sometimes informally, delivery is to be performed. In the case of simple matters, such as simple financial benefit, the delivery is simple as well. In the case of complex provision of services and benefits, the delivery entails besides the direct provision, coordination, care for continuity and monitoring of the effects. When it is about informal provision the attention must be given to the stability of newly mobilised resources, e.g. by giving needed support to participants, also coordination and common interest. Attention must be given also to the interface of the Life-World with “other worlds” in a way that the latter do not overrun the former, that the “colonialization” impact of the abstract scheme is reduced to a minimum.

The best example of this basic operation is person centred care (personal planning and coordinating care). It is based on the personal plan, which presents and analyses person’s life situation, establishes personal goals and operatively sets them in motion by listing the providers, the needed means and resources, sets the deadlines and, in case of direct funding, calculates the costs. It begins with an individual person, consults with other actors involved and is usually approved on a team conference. After that, it is beginning to be delivered with a support of the care coordinator. (Further reading:  Brandon, 1994; Glasby, 2002; Rafaelič, Nagode, Flaker, 2013).  

References:

Brandon, D., Brandon, A. (1994), Yin and Yang of Care Planning. Cambridge: Anglia University.

Glasby, J., Littlechild, R. (2002), Social Work and Direct Payments. Bristol: Policy Press.

Illich, I. (1992), Needs. V: Sachs W., (ed.) The Development Dictionary. London: Zed Books: 88-101.

Rafaelič, A., Nagode, M. & Flaker, V. (2013) ‘Direct payments as a means of long-term care provision and a vehicle of resettlement from total institutions’, Dialogue in praxis, Volume 2 (15), Issue 1—2 (24—25), 2013, pp. 93—109. [Online] available at: http://dialogueinpraxis.fsd.uni-lj.si/index.php?id=5&a=article&aid=30

The importance of minor needs (part two)

Contacts

Contacts with other people are not only psychological and social need it is also physiological (not only for infant the touch is physiological need). In the networks we not only get the moral and emotional support, we exchange goods, services and information. With participation in networks we constitute our identities.

People with disabilities and people in need in general, tend to have somehow weaker and poorer social networks. They have less people in the networks, the ties are spatially and socially less radial, do not reach far, and exchanges they have are more asymmetrical – both in terms of input and output (receiving and providing help and support) as well as in power relationships.

“Never all of us attended a feast …” (relative of a child with disability)

Sometimes poor network resources are among the reasons for institutionalisation. What is supposed to be a remedy turns into even more poisonous situation. Institutions usually destroy the social contacts one has had. One of the main needs upon leaving the institution is to renew contacts one has had and to establish new ones.

(Re)connecting with family is one of the frequent goals or priorities in personal plans. Some have a contact with their family and some do not. What they all have in common is that they would like to have more contacts with their family. The connection with family members when people are inside the institution, is very bad. Some of the residents spoke about wanting to move in with their family. Moving in with your family is one of the ways of living after you leave the institution and the transition is way easier if you have an existing relationship and connection with your family even before you move out of the institution, and even in cases people will not live with the family (observation in interviews in DK). Community provision on the other hand supports contacts. Majority of foster care givers (97 %), for example, consider that their protégés are accepted by their peers (UNDP 2017b: 34).

Love, being in love, being loved and sex are also a very important part of our lives. Even so it is often forgotten in institutions that people have love and sexual needs, couples do not share the rooms and having sex in an institution is more than a sexual or romantic experience a game of finding an almost hidden place where an intercourse can quickly happen without major interruptions. Even if sex happens in unusual circumstances, it is quite easy to get it in institutions, which in fact are quite promiscuous. For some people after returning from institutions their love and sexual life might be reduced or more precisely, the opportunities will not be at hand and will take more effort and courting. 

Career and dealing with the system

Goffman (1961: 199) connects the institutional career to two main characteristics; the first is the internal perception of the person in creating and experiencing their own identity, the second is the real position of the person, their life style and status of an inmate or mental patient. The career can be divided in three phases the pre-patient phase, the patient phase and the ex-patient phase.

Career needs are connected to the time spent in institution, with the personnel and possibilities of choice and information, but also to the community services. The second slot of needs connected to the institutional career are created because of stigma and the effects of the stigma such as (unsuitable) medication, personal biographies that are degradation and crate unequal opportunities, and not enough possibilities to play different social roles.

The access to the basic health services package for people with disabilities is disabled. There are troubles in acquiring necessary medicaments without paying ‘participation’, the treatment of people with disability until their 26 year as children limits access to free health protection, medical treatment, orthopaedic devices insurances and medical rehabilitation, lack of transport facilities, physical access and often the reception by the staff is curtailing their rights to health (focus group and interview with parents). More than half of people with disabilities are not satisfied with the health system, because a selective approach, treatments and access to drugs are insufficient developed and outdated. (Šavreski, Kočoska, 2017: 27)

Life events - stress, certainty and purpose

An important preoccupation for people with disabilities is to stay in a home environment, not to go to an institution. That is usually important for their relatives until they do not burn out. Because of the system of exhaustion that forces the relatives quite often to take care of the relative only by themselves they often feel and are overburdened, left by themselves and face health problems also themselves.

Institutionalisation is not a need of the people that are institutionalised but the need of others. Institutions are responses to the need of others to be relieved, reassured and to make sense. Usually people with disabilities end in institutions when others cannot take care of them anymore, when we start doubting in things we have taken for granted. In this way hospitalisation or institutionalisation at least for a short period make life more tolerable, and when a situation they are faced with do not make sense anymore the institutions and professionals create certainty and sense.

Another big worry of parents and relatives of people with disabilities is also what will happen to their child after they die. There is no assurance that their relatives will have the same quality of life and other peoples experience show to them that their relatives’ quality of life often decreases. It is quite usual that people with disabilities end up in institutions after their relatives die. Parents or other people who dedicate their life to care about people who need support perform a more than 8-hour shift. They need to be relieved from time to time, to take a break to care about other children, their professional career and social commitments. (HOPS focus group DC Kavadarci)

Experiencing violence is a life event that people in need face often – every fifth disabled child experienced violence (UNDP 2017a). The violence happens in everyday situations, in families (UNDP 2017b: 33) as well as in care institutions.

Emancipation and affiliation

Emancipation is at the same time a need for independence and dependence. The main presumption of life is to be dependent on others, everyone needs help and support. At the same time today’s society is based on independence. People with disabilities demand more control and power over their own lives but at the same time it is important not to be excluded and to be connected with the community. Inclusion means physically and socially becoming a part of a group with the aim to achieve common interests or just to hang around for common activities, joint work etc. But often the environment does not believe and trust people with disabilities to make their own decisions and live and independent life. 

In general in Macedonia, very small number of relatives consider that people with disabilities could live independently in the future. Only 10 to 20 % of the family members believe that their relatives with disabilities could live alone in the future (UNPD 2017a: 52). One of the reasons why people do not believe that people with disabilities could live independently is because users or their relatives  know little about the opportunities for independent living in specially organised residential units (UNDP 2017a: 52-54).

Regarding the involvement in community life the UNPD survey has shown big differences between Skopje (where there should be more civil activities and organisations) and the other regions. In Skopje only 14 % of people with disabilities are familiar with civic initiatives, whilst elsewhere the numbers are from 34 – 43 % (UNPD 2017a: 41). Most of the respondents who are familiar with civil initiatives and civil society organizations operating in their local community are actually members of the organizations (UNPD 2017a: 42). Only a third of them are actively participating in the creation of this civil initiatives or organisation activities. The majority of those participating are also active in the implementation of these activities (UNPD 2017a: 41–42)

Participation in everyday life is even more important for people living in institutions. In their personal plans they, as a rule, want more exits from the institution. Apart from not letting people out of the institution being a gruesome violation of basic human rights, from the perspective of closing Demir Kapija, it is very important for residents to participate in the everyday life outside of institution.

Claimer: This blog is intended as a part of Situation Analysis and Assessment/ Evaluation Report of Implementation of National Strategy on Deinstitutionalisation 2008-2018 which will be soon presented to the public within the EU framework project Technical assistance support for the deinstitutionalization process in social sector. For this blog Andreja Rafaelič is considered to be co-author.

References:

Conceptualisation of the needs according to the categories above may be found in:

Flaker, V., Mali, J., Kodele, T., Grebenc, V., Škerjanc, J., Urek, M. (2008), Dolgotrajna oskrba: Očrt potreb in odgovorov nanje. Ljubljana: Fakulteta za socialno delo.

Other references:

Goffman, E. (1961), Asylums. New York: Doubleday & Co. (Pelican edition 1968).

Šavreski, Z., Kočoska, E. (2017) ANED Country report on social protection and Article 28 UNCRPD – FYR Macedonia, Academic network of European disability experts, [On line] Available at: http://www.disability-europe.net/country/fyr-macedonia?theme=social-protection

UNDP (2017a) Research among persons with disabilities in three regions in Macedonia.  Research report - December 2016 – January 2017, Skopje: UNDP.

UNDP (2017b) Research among children/persons with disability under foster care in Macedonia. Research report – December 2016-January 2017, Skopje: UNDP.

The importance of minor needs (part one)

Social policy usually addresses the needs that are visible even from the distance, relatively easily identifiable and that constitute the major and robust indicators of wellbeing – e.g. poverty, housing needs, access to health, education, employment rates, income, housing etc. Health care or nursing has a more micro-perspective, while nominally acknowledging the environmental and social impacts, it deals mainly with the body and life-functions in relation to person’s dependency on care of the other (feeding, mobility, personal care and hygiene etc.) ('Virginia Henderson, cf.: Current nursing 2012). Psychology does address needs of more personal kind, however in a rather abstract and grand way (e.g. needs of belonging, self-esteem, self-actualisation in Maslow’s (1970) hierarchy of needs) and attributes the need to the human personality rather than social interaction. While all these aspects are important, it is equally important to address the needs arising from the minute aspects of social interaction – the ones arising from performing everyday activities, ones that deal with stigma and conversely with respect, with career (especially ‘downward’ streams), life events and the issues of emancipation and affiliation as the basis of the personal (contractual) power (Flaker et al., 2008).

Daily Activities

Everyday activities like routines, personal hygiene, housework and various errands are usually not perceived as needs, rather as something that needs to be done. When in need of support of others these, activities become needs, something that we need to put an effort to attain. There is little research on these needs in Macedonia. However, we can safely assume that there is a great need for support in doing precisely these activities. One of the indicators for residents of the institutions is that the main bulk of work in them is dedicated precisely to these issues: personal hygiene, feeding, lifting, moving around etc. This of course may be partly due to orientation of the institutions but mainly it is because of the need for such support. In the process of personal planning and in introducing of intensive interaction it was obvious that these activities are of crucial importance – not only in term of people being fed, washed and warm, but also in terms of the humanity and sociability of people with intense needs. These are not only instrumental activities as we usually see them but also means of connecting, asserting ones will and presenting oneself to others. What is so obvious with people with intense needs is true for everybody else, regardless their impairment, however some people need less support.

Among the people in need who do not reside in institution, these needs are more obvious with people in old age who sometimes are becoming dependent on help of other people progressively, it is also obvious with some physical disabilities, but also very important with mental disabilities. People with intellectual disabilities would sometimes need assistance in taking care of housework, in doing errands, shopping etc. Similarly, people with mental health problems often need help in maintaining their households, escort when making errands of bureaucratic kind, in some cases (e.g. depression) also with the bodily hygiene. With children this need is obvious regardless existence of disability, in their case care has also pedagogic elements of learning to care for oneself. This process is with children with disabilities probably slower and has to be given a special attention (Flaker et al., 2008).

In contrast with everyday routines of self-care, housework and errands in public, which are usually experienced as mere necessities, however instrumental they are for the quality of life, the leisure activities are more seen as desires, and something of our particular choice, something that expresses our identity and something that creates it.

In personal plans, residents of Demir Kapija expressed the wish to have more of the cultural life with an emphasis on a music and concerts. This seems important from the perspective of giving people back their identity. Being able to participate in the cultural happenings is important for a person to live a fuller life inside or outside of the institution, life not reduced to what to eat, what to drink and where to sleep. These activities are viable while institutions are still in existence and for the process of transition as the concert organised in DK indicated. However, the more important is to observe these needs in the post institutional settings, since it is important means of participation of people with disabilities in the community, society, a means or acquiring valued social roles but also of expression and representation of one’s distress, experience of being labelled, discriminated to the public at large.

Stigma and difficulties in interaction

 

Although discrimination can happen on many diverse levels, including the structural ones, the stigma is an interaction phenomenon, it happens in the everyday contacts of the people. As a disqualifier it operates in the realm of interactional offences, small things, mishaps, mistakes, we do all the time in the everyday interactions that can imply that we are not respecting the personality (personal space, belongings, ways of addressing the other – eye contact, listening etc.). These mistakes are usually mended as we go without even noticing that there was an offence, by apologies, politeness, kindness and other remedial interaction (Goffman, 1963). Stigma interprets these offences by referring them to the discredited status an interactant (e.g. disability) and destroys possibilities of the remedial actions of the interactants. Stigma is therefore, a destructive disruption of everyday interaction by imputing to the interaction extraneous definition of situation and disabling interactants to refer to the immediate relevance of the interaction.

Being a recipient of a social benefit, a user of social service (crossing the subsidiarity threshold) is stigmatising since it shows that I am not capable of taking care of myself and that I do not have my own people to help me with that. This seems to be a very strong issue in Macedonian culture. A social worker recalled a person who after receiving a social benefit when he was in need wanted to repay it after he recuperated. This can be sign of modesty and pride, but also as somebody, like in an everyday interaction wanting to remedy his interaction offence, to reconstruct himself as a credible member of the community.

Being in an institution cements this stigma, perception of somebody as not credible. The fact that somebody lives in an institution gives off the message that he or she is not being able (not to be trusted) to live with other people, have a status of the full citizen. Placing somebody in an institution makes a label more than just utterance – it becomes a social fact. This has not only the immediate effect on the stigma of the person who is institutionalised but also, by the signification chain on all the (potential) people who could be so labelled. 

Resettling from institution will likely cause two processes. One is that it will weaken the stigma since the “place” of cementing the discrediting act, the other will be that people with disabilities and other labels who are now in the institutions will be more present in the society and therefore make it possible to deal with the issue of exclusion and inclusion in the immediate environments and in practical term. This will definitely diminish the overall power of stigma but can sometime spark also immediate rejection and moral panics and crusades (e.g. NIMBY).

Stigma finds its logical basis in the way disability is recognised and described: a medical condition marking the person with a stigma that no medical treatment can erase. It translates into unchanging disadvantage and results in a misfortunate state deserving pity, charity but calling also for differentiation and exclusion (Shavreski, Kochoska, 2017: 28).

Claimer: This blog is intended as a part of Situation Analysis and Assessment/ Evaluation Report of Implementation of National Strategy on Deinstitutionalisation 2008-2018 which will be soon presented to the public within the EU framework project Technical assistance support for the deinstitutionalization process in social sector. For this blog Andreja Rafaelič is considered to be co-author.

References:

Current nursing (2012) 'Virginia Henderson's Need Theory' Current Nursing/ Nursing Theories. Available at: http://currentnursing.com/nursing_theory/henderson.html
Flaker, V., Mali, J., Kodele, T., Grebenc, V., Škerjanc, J., Urek, M. (2008), Dolgotrajna oskrba: Očrt potreb in odgovorov nanje. Ljubljana: Fakulteta za socialno delo.
Holland, K., Jenkins, J., Solomon, J, Whittam, S. (2008) Applying the Roper-Logan-Tierney Model in Practice. Churchill Livingstone.
Maslow, A. H. (1970). Motivation and personality. [2nd edition] New York: Harper & Row.
Roper, N., Logan, W., Tierney, A. J. (2001), The Roper-Logan-Tierney Model of Nursing. Edinburgh: Churchill Livingstone.
Shavreski, Z. & Kochoska, E. (2017) ANED Country report on social protection and Article 28 UNCRPD – FYR Macedonia, Academic network of European disability experts, [On line] Available at: http://www.disability-europe.net/country/fyr-macedonia?theme=social-protection