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.