Vito Flaker agenda: 2017

nedelja, 31. december 2017

Housing needs in deinstitutionalisation

Housing is one of the most important needs to address in the process of DI and developing community care. Besides providing the shelter from the atmospheric adversities, the housing provides many important functions in people’s lives. A house or a flat is a place where people can construct their identities (by choice of living arrangements, furniture, decoration etc. and by forming relationships, family by co-residents), it is an important place of social activities, a place to invite people and be invited to and it is a place of intimacy and privacy as well. It is also a place to store one’s belongings (a personal museum) and an important item in constructing a formal virtual reality and contractual power – a place of permanent address (Flaker et al. 2013).

In deinstitutionalisation, issue of housing is one of the most important practical questions: where will people going out of an institution live. The question is burning since many of the residents have lost their homes and for many the housing problems were crucial moment in becoming a resident of the institutions. A little number has a property, but needs to be renovated or adapted for use. Some would like to return to their families, but conditions (be it material or social – broken relationships) hardly permit this. Even if there were premises available most of the residents would need support in the issues related to having a home. They would need support in maintenance of a flat or a house, in developing and maintaining privacy and intimacy, in choosing eventual flat mates and handling the relationship with them. Above all, in order to have a home, they would need a secure tenure (or ownership) in order to exert the right of having a home of one’s own (Flaker et al. 2013).

Housing needs

Need of secure tenure

Support in maintenance and housework

Adapting the house for personal requirements

Choice of co-residents or living alone

Need for privacy and intimacy, but also to be able to host friends and acquaintances

Need of permanent address

Need for temporary accommodation – transition period, training and rehabilitation, respite, crisis accommodation

Possibility for new forms of cohabitation (shared household, housing communities and cooperatives)

Source: Flaker et al., 2013.

For users that are not residents of institutions picture is more favourable. According to UNDP research ( 5-7) majority of disabled people have decent housing conditions. Majority lives in homes with three or more rooms, however, especially in urban areas (31 % as opposed to 12%) live in accommodation that has two rooms or less. Mostly they live in owned accommodation (research does not specify whether it is owned by a person with disability or their family), however there is a margin of respondents (6-17 %) who do not specify the nature of the accommodation ownership or would not answer the question of the number of rooms (2-7 %). This indicates that there might be housing problems for something like 5-10 % of people who are labelled with disability. Therefore, we can assume that there is about 1000 or more people who have problems with housing. This number is probably larger if we include the people who have inappropriate housing (poor conditions, arrangements not suiting their disability, living with people they do not want to live with or have problems with neighbours[1]).

For other groups of vulnerable people the proportions could be worse. It is known that mental health problems can be connected with housing issues (as cause or a consequence of mental distress). For old people in general housing problem is not so big, often there are cases that old people have more than plenty living space. However, there are some who live in bad condition, are evicted or cannot maintain their accommodation.

For the people in need who at the moment do not reside in the institutions access to housing is of virtual importance in the perspective of independent living. Most of those family members who believe that a person with disabilities can live independently consider that besides the employment housing is needed (UNDP N: 52).

We can conclude that housing needs are among the most important if not the most important to address in the process of DI. Most of the residents of the institutions would need new housing arrangements, a big number (almost all) of would be ex-residents will need some input in arranging accommodation either in their families or their property. For a relatively small proportion, but still substantial number of people in need of care and support access to secure accommodation would alleviate their distress and provide possibilities of independent living. A very rough estimate is that there will be needed a housing stock of more than 2000 units in Macedonia.

To come to the better and more precise assessment of needs in numbers but also in type of housing needs more research and investigation is needed that will estimate existing housing stock owned by users and services, circumstances of accommodation of the residents and community services user, preferable and appropriate housing arrangements, support needed to maintain the accommodation, and the needs regarding the use of flats or houses. This should also include the accessibility issues and the possibilities for use of assistive technologies.

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.

Reference

Flaker, Vito, Vera Grebenc, Tadeja Kodele, Jana Mali & Mojca Urek (2013) 'Where do you live? - Housing and long-term care (Kje živiš? - Nastanitev in dolgotrajna oskrba)', Dialogue in Praxis, Volume 2 (15), Issue 1—2 (24—25), 2013, pp. 111—132

[1] Persons with disabilities are the most discriminated against in the provision of adequate housing and their inclusion in the community. 27% of the responders stated that they would not like as a neighbour person with intellectual disability; while people with physical disabilities are more acceptable as neighbours than those with intellectual disabilities.See publication: Naumovska Vojnovska A. Grozdanova E. Kasumi A. Kikerekova T. Sajkovska B. Stamenkovska Z, Stojanovik V., Trenchevska J., Useinova I., Fakovikl N., Cvetkovska S., “Guidelines for implementation of the national strategy for equal opportunities and non-discrimination base on ethnic age, disability and gender”, British Council in Macedonia, 2013, p. 25, http://www.britishcouncil.mk/sites/britishcouncil.mk/files/vodic_nsen_mk.pdf quoted in ANED SP: 21

sobota, 30. december 2017

From one response to plenitude of needs to multitude of responses to generic human needs

The attribute of a total institution derives from the fact that institutions take care of all the needs under one roof by one authority and in a uniform manner. In the contemporary, post-industrial, diversified society, this is unusual, dysfunctional and ethically wrong, since it is massively curtailing residents’ rights, providing poor satisfaction of needs and is damaging on social, emotional and health levels. The deinstitutionalisation is aiming to the opposite – acknowledgement that people basically have similar generic needs but a very diverse priorities and ways of satisfying them.

While until recently, and still very dominant, professional and lay public have perceived people with disabilities through the perspective of medical model, based on the notion of deficiency and regarded the people with disability to have ‘special needs’ that can be addressed only by specialist action (in a special institution). The so called social model introduces the concept of quality of life as a criterion of social intervention. The main aim of support is to enable people with long-term distress to live a quality life. This means that we have to observe the ordinary needs and see of which needs people with various labels are deprived off, what are the contingencies of these deprivations and what is needed in typical situation corresponding to these needs.

The type of needs that needs to be observed (Flaker et al., 2008):

1. Housing
2. Work and income
3. Everyday activities (including leisure)
4. Social contacts
5. Interaction and stigma
6. Career and dealing with the system
7. Life events - stress, certainty and purpose
8. Emancipation and affiliation.

At the moment there is little systematic knowledge on patterns of how people with disabilities satisfy these needs, what obstacles they face and what kind of support they would need; nor of the extent of unmet needs of the residents, users or potential users of community services. Below we sketch some of the insights regarding these.

Strategically, to put people’s needs as a point of departure in planning services is thus also an important turning point as to look at people with disabilities as primarily people, and to turn the attention from their (in)capabilities to the quality of life. It is important to base the strategy, the development of services on the needs of the people, to consult them individually (by the means of personal plans) and collectively on local and regional but also national levels about what their needs are and put the ‘needs’ as starting point of common effort and public response to distress.

In some of the next blogs we will try to sketch the issues regarding the needs of the people who experience long-term distress. Thus we will try to indicate basic knots of expressing and satisfying needs based on the insights provided by our investigation and conceptual work and in great part on the existing research and other existing data. There was a substantial work done in term of the research that can inform us[1]; this research is, however, biased in two direction. It is particularly rich on the issue of employment, while on other topics not informative enough; there is very little information on everyday life activities and social networks and similar ‘minor’, hard to detect needs. The research design is usually descriptive and quantities, as such lack an analytic dimension and insight in (stories) how people are actually living and coping with their situation.

Reference:

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.

[1] Main research reference for the discussion below with be the UNDP survey “Needs and Demand for Vocational Rehabilitation and Personal Assistance Services” in the frame of the EU IPA funded project “Promoting Social Inclusion Services”.

četrtek, 28. december 2017

Needs perception

People with disabilities perceive their needs as ordinary needs that everyone has. They want to have a home, to have a social life, to have a job or at least something to do, have an income. They want to grow up, have a happy old age; they want to lead their own life and have their own rhythm and be able to engage in leisure activities. They want to be relieved of the stress, which they encounter and be certain, at least, of basic contingencies of life, and, to have purpose in their lives. They want to be in interaction with other people, be understood and tolerated for little mistakes everyone makes. They want to connect to the people in meaningful exchanges to get information, exchange goods and services, but also to love and be loved. They want to be supported when in need but also respected when they are clients of various services and institutions. They want the power and strength to be able to decide on their lives and at the same time to belong to groups, community and society (Flaker et al., 2008).

These needs, no matter how ordinary, are hard to satisfy when one is labelled with a disability or a similar label (being old, poor, psychiatric patient etc.). Not only impairments even more so social and spatial arrangements, relationships and stigma produce many obstacles, barriers of physical, mental and cultural and attitudinal nature. In such situation, it is sometimes even hard to express, assert the needs, let alone to satisfy them. The result is that people placed in these precarious situations perceive some needs that we take for granted as burning, critical and urgent (as the need to go to the toilet whenever needed, do shopping, see friends and family for holidays). Due to a society which has built-up these access barriers and a system which has led to the segregation and social isolation people in such situations have had to resign themselves to a much more modest and constrained way of life than people usually have. As a result, one acquires very low expectations, often low self-esteem and feel discouraged from making any demands and on the other hand, people develop ingenuity and bravery to cope with precarious contingencies that often are coupled with despair and sometimes-even anger (caused by great frustration) (Flaker et al., 2008).

The public at large mostly neglects the needs of the people with disabilities. Partly because of the invisibility and marginality, since many of them are confined either in institutions or at home because of the shame families may feel in some communities about disability, partly because the mobility constraints and access barriers. Often people that are helped by others are seen as ought-to-be-happy since they have been provided with their ‘basic’ needs and for their ‘special’ needs and should not ask for more. In this view, they are in effect deprived of needing, desiring or wanting many things that everybody takes for granted.

When asked people who have a prominent position in the community know very few if any people in need of support or with long-term distress. On other hand they perceive the residents of the institution as such. (interview in DK)

Generally, people with disabilities have stigma attached to them (particularly for the labels of severe intellectual disabilities, or behavioural and mental health issues), which is mainly based on the myths false very negative perceptions (being dangerous, incompetent, unworthy), losing humanity due to deviation from normality, from ideals of rationality, intelligence etc. Basically, this supports the disqualification as citizens, and decrease or even removal of a general contractual power (Basaglia, 1967).

These myths are supported by the myth of institutions being the right place to deal with people so labelled, since they need a special treatment and do not need (are not entitled to) what is ordinarily available in social, economic and everyday life. This myth is supported by the actual reality and day-to-day experience of the people with disabilities (Flaker, 2014).

The classic professional ideologies used to be very much in tune with disabling ideologies at large, sometimes even supporting and promoting them. The mandate of a social worker, a doctor, a special educator, a nurse and other helping professions is traditionally constructed on the ‘defect’[1] of their users, the need for help. In spite of recent changes in professional ideologies towards seeing the people as able (strength perspective), deserving and an important part of the society, these professional myths and ideologies still prevail on the ground in practical situations.

All they (the inmates) need is to have a roof over their heads, be fed and sleep. And they are happy with that. (interview in DK)

To put people’s needs as a point of departure in planning services is thus also an important turning point as to look at people with disabilities as primarily people, and to turn the attention away from their disabilities towards their capabilities and to the quality of life.

You have to take them (the inmates) as individuals and never restrict their possibilities. You can never predict what anyone can achieve. (Interview in DK)

References:

Basaglia, F. (ur.) (1967), Che cos’e la psichiatria ? Parma: Amministrazione provinciale di Parma.

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.

Flaker, V. (2014). ‘Deinstitutionalisation as a machine'. Dialogue in Praxis. 1–2 (1–2) Available on 10.12.2017 at: http://www.dialogueinpraxis.net.

[1] The term ‘defective’ and ‘defectology’ support this negative notion of disability and the process of helping itself.