Design of supported living spaces in the community

4.1. Size and needs of the target population – a numeric example

At the level of urban or rural districts, the target population is manageable in terms of size. Using the epidemiological data of Lowe et al. (2007; see above) as the basis for estimate, a medium-sized city of 250,000 inhabitants (e.g. Münster with approx. 278,000 inhabitants) can be expected to have the following levels of incidence:

Calculation of numbers for a city of 250,000 inhabitants

Prevalence of people with mental disability and CB: 4.5 per 10,000 inhabitants

People with intellectual disability and CB in total: 112 inhabitants (37 female, 75 male)

of whom 25% children & juveniles: 28 inhabitants of whom 2/3 with temporary CB: 18 inhabitants of whom 1/3 with long-term CB: 10 inhabitants of whom 75% adults: 84 inhabitants

of whom 1/2 with temporary CB: 42 inhabitants of whom 1/2 with long-term CB: 42 inhabitants

In addition, there are a further 75 people with less severe CB (prevalence for intellectual disability & CB: 7.5 per 10,000 inhabitants).

In analysing needs, a difference must be made

• between children and juveniles on the one hand and adults on the other,

• between cases in which the behaviour frequently leads to dangerous, highly critical situations (CB) and those in which it does not,

• between individuals who behave in this way only temporarily, in crisis, and those who do so for many years.

In the British study of Lowe et al. (2007), 82% of the intellectually disabled children and juveniles with CB lived in their family of origin.

The same is presumably also the case in other European countries.

Families should be able to use the general services for children and juveniles, and they need multiprofessional counselling that is specialized in CB, e.g. through psychiatric outpatients or at child support centres. In the majority of cases, children and juveniles can be brought to change their behaviour or even abandon it altogether.

After-school day groups, family support services and short-term accommodation places relieve the burden on families. For acute psychosocial crises, crises places should be available that can also be used for children without disability. Permanent residential units are only needed for a very small number of children and juveniles with CB. In the study by Lowe et al. (2007), only 13 % of minors with CB were living in residential settings of this kind.

Adults with intellectual disability live with family members, or in their own flat with flatmates, as a couple or by themselves, or in smaller or larger residential institutions. In the individual European countries, the distribution among these different forms of living differs widely (see Mansell et al. 2007). What is to be done if someone living with others develops crisis behaviour that jeopardizes him/herself and those around him/her? Apart from intervention in psychosocial or psychiatric crises, rapid access to specialist external counselling has proved useful (see Section 4.2). A matter of crucial importance is to carry out individual support planning that takes account of all areas of life of the individual and all other persons affected and that makes use of the possibilities available locally.

This may also include temporarily adjusting the nature and scope of the support so as to safeguard the person’s ability to stay in-area and gain time to overcome the crisis.

The need and skill profiles of people with intellectual disability who behave challengingly over many years differ significantly.

Individual living arrangements have to take account both of their needs and those of housemates, neighbours etc. (social acceptance).

What range of movement does the individual need? Does he/she prefer to live alone, and is it better for him/her to do so? or is his/her well-being dependent on other people? How should the distance from and contact with neighbours be taken care of? Professional support for the caring personnel (e.g. through external case supervision) and the

involvement of the primary social network are keys to high quality of life. The professional carer also acts as the coordinator of aid, as an interpreter, and intervenes in times of crisis. Of crucial importance for the ability of the people to stay in the community is the access to workshops for disabled people and to other employment and leisure opportunities, as well as cooperation between the services. It is also a fact of social reality that someone who behaves in a challenging way is confronted with rejection by others.

4.2. Elements of support structures within the community Let us now take a look into the future: How should support for people with intellectual disability and CB be organized in the community in 20 years’ time?

Duty of care and cross-departmental network management Local politicians and the local service providers see it as part of their duty to support citizens with a disability and CB within their communities. Moving people with CB to other regions due to lack of local alternatives is no longer accepted. In the local planning process, people with CB keep, or acquire, an individual face. They are viewed

“holistically”, with their resources and their disruption potential and within their socio-biographical context. Local institutions and services have become networked and have made binding agreements to work hand-in-hand on individual cases and provide the mix of help that is needed and desired.

Qualified services and professional supporters

Service providers have to be able to adjust to the needs both of those who have already manifested SCB and those who are at risk of developing such behaviour under certain circumstances. For the service providers, this means four fields of action (Department of Health 1993, Bradl 1999):

• Prevention: Living and care conditions must be designed in such a way that potential triggers of problem behaviour occur less frequently or not at all, e.g. by creating and using stimulation-rich, needs-oriented environments in all areas of life; through the support for dependable, emotionally stabilizing social relationships;

through the introduction of supported communication methods, and through participative planning and provision of assistance

• Early detection of danger signs and the development of problematic care situations, and the rapid enlistment of counselling support

• Crisis management: Interventions consisting of appropriate staff responses to the behaviour displayed, the communicative actions, crisis intervention in the case of escalation and lacking self-control (see Wüllenweber & Theunissen 2001), and recourse to crisis placements and/or external crisis intervention services

• For a small group of persons, specialized long-term support must be organized in individual cases.

The relationship of dependency between a care person and an intellectually disabled person with CB is characterized on both sides by a perception of power and powerlessness. The actions of the staff must be guided by a responsible and caring attitude within this relationship (see Kittay, 2004). Care givers are required who are able to “handle” borderline situations both emotionally and practically, in confrontation with themselves and in interacting with colleagues. Staff must also be able, on the strength of a pedagogical qualification, to apply tried-and-tested professional work methods and to gain access to the community for and with their clients – also as interpreters and mediators in the case of conflicts.

It is one of the tasks of the social service bodies to recruit professionally qualified staff and provide them with appropriate further training appropriate to their duties. The basis for professional action should be a concept in which the organization records with the aid of what goals, action strategies and resources inside and outside the organization (internal competence centre, networking with external experts and services) it intends to tackle difficult care situations and how it will evaluate the experience gained. The individual staff members must thereby be supported by a team, by the procedure laid down in the concept, and by a view from outside (case consultancy, supervision, experts available for advisory capacity). Social control will play an important role as the staff are working increasingly independently, without constant contact with colleagues.

Individual planning and provision of help

Especially in the case of CB, the need for support – both qualitatively and quantitatively – differs widely from individual

to individual. Appropriately scaled support arrangements must be agreed in each individual case, rather than the standardized, all-inclusive service packages of today.

Members of the primary network (family, friends, housemates or colleagues) and the secondary network (professional carers, experts in various fields and voluntary helpers) must be involved in the support planning process. A case manager structures the assessment, advises on the selection of services and coordinates the support.

Interdisciplinary cooperation between educational specialists, psychologists and psychiatrists has proved useful in practice.

Within the scope of a system-oriented view, an attempt is made to understand the function of the behaviour for the actor and the other persons involved and the conditions that sustain the behaviour, and to propose interventions. It can often be useful in this context to grasp frequent CB as an acquired and preferred strategy used by a person to stabilize him/herself in stressful situations. And also the interacting care persons apply their own preferred strategies for keeping themselves and the situation under control. Analysis of this interaction makes it possible, as a second step, to disturb the effectful actions of the client and thus force the client to vary his/her strategies (for more on this see Escalera 2001).

However, the assessment must focus not just on the CB alone, but should also ask about the needs, interests and satisfaction of the client in all areas of life. Confronted with the CB, the caring persons have often completely lost sight of the needs and participating experiences of the person. It is crucial not to seek to eliminate the CB through restrictive measures but to build alternative behaviours with an enhanced reinforcement value for the individual, i.e.

behaviours that are more interesting and rewarding than the problematic behaviour. It is therefore a question of creating ecological conditions that allow people with CB to achieve the greatest possible measure of participation, communication, interaction and interest-led activities and at the same time give everyone involved a sense of security in crisis situations. The term “positive behaviour support” has become established for this ecological development of behaviour therapy (Koegel et al. 2001, Theunissen 2009). For some clients, clear structuring and visualization of the environment

and the daily processes with the aid of the TEACCH method, for example, can be helpful.

In the individual support planning process, the parties will look jointly at the resources, with the question being asked more seriously than in the past to what extent the primary social network is willing and able to provide support. On the one side, family members have a high inclusion potential, but on the other, they must not be stretched beyond breaking point for the sake of economic motives if there is a wish to avoid putting the positive relationships at risk.

Home living in different settings

If the procurement of living accommodation is separated from the provision of personal assistance, the view is left clear as to what is really important for a person in the home and the immediate home environment.

In some individuals, emotional instability is the consequence of stress caused by having to live against their will with several people in one house or flat. others need the physical proximity of another person in order to retain their balance. For others again, it is sufficient if they have the possibility to be with someone when they have the need to be so. The same also applies to the presence or absence of supporters: In some cases, a close, structured presence is helpful, while in others, freedom without social control is beneficial.

As a general rule, it will become more difficult in future to find people who are prepared to share a home with someone whose behaviour is sometimes disruptive and who crosses social boundaries.

Also the secure, protected spaces in which people can move and which they need can vary. House and settlement communities have more safe areas than individual flats in high-rise buildings. A physical distance to the neighbours reduces disturbances and generally promotes good neighbourly relations (cf. Flade, 2006, 81f.).

In looking for somewhere to live, attention must be paid to the contact points (people and activities) which can be conveniently reached on foot or by other means and are important to someone.

Attention must also be paid to what extent social inclusion and familiarity within a neighbourhood that result from a person’s biography are a resource, and to what extent they are a barrier to better quality of life.