The following is a paper Liz Sergeant, Stan Johnston and I wrote whilst designing the homes in Aberdeen. At some point a reworked version of this will be published but I think it provides a useful insight into some of the aspects of design that we had to negotiate.

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Supporting People with Complex Behavioural Difficulties and Autistic Spectrum Disorder in a Community Setting - An Inclusive Approach

Elizabeth V Sergeant (Liz), Guy Dewsbury and Stan Johnston
Independent Consultant, Aberdeenshire, Scotland, lizsergeant@supanet.com
Department of Computing, Infolab 21, Lancaster University, Lancaster, England, g.dewsbury@lancaster.ac.uk
Goldshield Electronic Security Limited, Newcastle upon Tyne, England, stan@gold-shield.fsnet.co.uk

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Biography
Liz Sergeant is an Director of Autism Initiative Scotland as well as an independent consultant who previously spent 5 years as a Social Work Manager with Aberdeen City Council Social Work Department. Her main focus is on ensuring appropriate design specifications for supported accommodation for people with disabilities. Guy Dewsbury specialises in designing appropriate domestic technological environments that meet the needs of users. Stan Johnson is Director of Goldshield Securities Limited who co-designs, installs, and maintains bespoke tailored systems to support people with disabilities in the community.

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Abstract
Moving into the community, whether from long-stay hospital or parental home, for the first time can be a daunting experience which can be compounded by some stressful mental and physical conditions. The authors of this paper have been working on designing bespoke supported accommodation for adults with complex needs and who present behaviours that challenge environments and carers. The paper examines the environmental factors that require consideration and proposes a holistic approach that is designed to meet individual needs through the use of appropriate building design and technological input, to complement the support provided by carers. Consideration is given with regard to these design criteria within a current legislative and socially responsive framework. Experience of the designs of supported accommodation that have been built in Aberdeen which were individually designed to meet the specific requirements of the residents informed the discussion herein.

Introduction

The closure of long-stay psychiatric and learning disability hospitals has been seen as an essential trend over recent decades, supported by social policy, legislative structures and a shift from providing health care, for chronic health care needs to a community base. Hospitals have become the focus of acute admission, assessment and forensic provision.

During the period of retraction of the long-stay learning disability resources, in Grampian, it was noted that a small yet significant number of people were being re-admitted, having a “failed” community placement. This resulted in a number of service users becoming “stuck” in the acute sector, being labeled as delayed discharge. In turn this placed the diminishing health resource under increasing pressure and caused health and local authority planners anxieties regarding the options for managing appropriate health and social care requirements in the community, come the day there was not the “safety net” of the long-stay health beds.

The provision of appropriate supported housing for people with complex needs and behaviours that challenged environments and carers, does present different challenges for planners, than the commissioning requirements for others groups. Solutions require to be managed in an interdisciplinary way to enable individuals to access appropriate combinations of health and social care intervention, at an optimum point in their lives. Examination of source of admission, of those identified as delayed discharge in 2001, indicated that 90% had come from group or parental homes, where the placement could not be sustained by additional medical and/or social intervention, due to the presenting behavioural difficulties. Of the long-stay population, where labels of challenging behaviour and a diagnosis of autistic spectrum disorder were identified as requiring a specialist planning response, 80% had originally been admitted from the parental or group home settings. A further group of 55 community based service users accessing out-patient support, were highlighted in this study, as having community placements that did not appropriately meet their needs. In this latter group 39% required an alternative service response, due to behaviours that challenged their living environment and those around them, many of whom had a defined diagnosis of autistic spectrum disorder (ASD).

The issue of providing responsive and appropriate support and care for people with autistic spectrum disorder (ASD) and those who present challenging behaviours have presented planners and commissioners with a conundrum. The development of community care provision for people with learning disabilities has resulted in the development of a number of models of support and accommodation, over the last twenty years, from hostels, small group homes and tenancies in the community. However there has also been significant breakdown in grouped placements for people with ASD or challenging behaviours, resulting in a need to either re-admit people to hospital or move them to alternative settings to resolve crisis situations. Moving people in order to resolve such crisis adds to the service user's stress and is potentially harmful to their well being. The aim for planners and commissioners should ideally be to ensure robust models of accommodation and support as part of the initial process, thus minimising the need to respond to crisis.

The process of planning in Aberdeen City has been to respond to the service user need in the broadest sense. The aim was to ensure that design of accommodation and service truly meets individual need from the onset, in order to avoid crisis situations that result in another move, which lead to a study over three years, into environmental response to individual need for people with ASD. The aim of the study has been to establish a basis for robust design of both accommodation and the support mechanisms required to respond to individual need. This paper outlines the findings of the study and provides readers with an understanding of the model adopted by the City Council.

Response to Living Environments

As part of the study observation, multidisciplinary assessment of individual needs and experience of housing and service providers has been taken into account, in reviewing design requirements for living environments for people with ASD and who may present behaviours that challenge their environment. It was noted, from earlier studies, that the smaller the living unit e.g. group home rather than larger hostel/institution, the greater the adaptive behaviour of service users (Heller, Miller & Factor, 1998; Heller, Miller & Hsieh, 2001) with individuals benefiting from more variety and stimulation from their living environment, as well as benefiting from greater community inclusion. Where there are individuals, who present behavioural difficulties and may or may not have a diagnosis of ASD, there is a tendency for adverse behavioural responses to be aggravated by environmental stimulation e.g. responding to those around the individual, noises, spatial use etc. Where individuals live in the family home there is an indication of slightly higher adaptive behaviour scores (Lowe, Felce, Perry et al, 1998), which indicates that the environment is more conducive to the individuals needs.

The National Autistic Society indicates that there are a number of problems, which require specific consideration when assessing the needs of people with ASD. All the following difficulties have a potential impact on living environments:
• “Resistance to change;
• Obsession or ritualistic behaviour;
• High level of anxiety;
• Lack of motivation;
• Inability to transfer skills from one setting to another;
• Vulnerability and susceptibility to exploitation;
• Depression;
• Challenging behaviour;
• Self injury.”
(NAS Factsheet “Care Services for People with Autism”)

Reported observations of service users either still resident in the hospital environment or in community based services, by carers, professionals and parents, or by above research indicated the following factors, which may be related to the problems highlighted by the National Autistic Society as above:

• It is common to find that there is a structured perception of the use of the living environment, related to their function e.g. the function of the kitchen is for food production, while eating is related to a dining room. Thus the use of the kitchen or living room, for the purpose of eating, may result in distress for some, due to the conceptual difficulty of using the space for a dual purpose. For another individual a similar difficulty arose with having a toilet situated in a bathroom, they had difficulty in aligning the two functions with one room space.
• Sensory sensitivity relating to sound, light and feel may have an impact on individuals response to their environment. Sounds that are high pitched often result in behavioural responses indicating stress, such as self-injurious behaviour, lashing out at others, and shouting or making of various noises. Sounds commonly identified as causing such stress are associated with heating systems, domestic appliances such as Hoover or food mixers and ventilation fans. Use of light, various fabrics, or colours may have similar effects.
• Furnishings and fitments commonly seen in a domestic setting provide for stressful stimulation e.g. curtains and pictures detract from the clean line of the wall and may be torn down. One service user became distressed by the skirting boards in his room, which detracted from the symmetry and attempted to remove them, severely damaging the walls. Other service users have found items such as radiators and toilet cisterns similarly stressful, within their environment. The furnishing of rooms has often to be kept to minimum, furniture being functional. There have been a number of reported incidents in various settings of furnishings being thrown, at points of crisis, which may result in damage to the property and/or individuals. Also reported was the need to ensure that furnishings do not block exits to rooms, enabling carers an accessible exit and entrance during critical incidents.
• Individuals who appear to have skills in one setting are unable to carry out the same or similar action in another setting, or if the familiar setting has been changed in any way.
• Activity around individual service users may lead to stress response reactions such as noise in a communal area which can distract the individual from the task at hand, or prevent them from carrying out a task, e.g. communal dining areas may prevent or distract individuals from eating their meal or the distress of other residents is a catalyst for the individual to become agitated.
• The process of eating may be problematic for some people, with textures, colours and smells of food causing distress. Trying new foods and eating in new settings or in public places may result in stress for some individuals. It has been noted that many people with ASD like to eat on their own, in familiar settings and with familiar routines.

Changes in routines, structure and carers may result in increased anxiety for people with ASD, with an overload of information/stimulation being received by the individual and difficulty being experienced in understanding. This may result in increased anxiety, depression and may lead to outward displays of aggression or self-injurious behaviour. The types of physical responses that are commonly reported are:

• outbursts of repetitive or stereotyped movements, such as hand flapping, finger twisting or complex whole body movement, such as jumping, pacing, running and banging against surfaces;
• rocking;
• ritualistic actions, if not able to complete tasks in specific orders stress and agitation resulting in aggression which may be verbal or physical, however it is important not to confuse ritualistic actions which are methods of normal communication with those relating to stress;
• Self-mutilation, including hitting head and/or hands off the walls and windows or biting of hands;
• Triggering of seizures in people with epilepsy.
These are often seen as signs of stress or stimulation, resulting from response to the environment or to communication and stimulation from other people (or animals) around.

There have been a number of reported impacts that such understanding and behaviours have on the environment, from housing and service providers as well as those in the construction industry. These include:

• Damage to walls and ceilings, with holes in plasterwork, due to excessive gross movement or aggressive outbursts;
• Damage to paintwork, with excessive touching and rubbing;
• Doors damaged due to holes being punched or excessive slamming;
• Radiators, toilet cisterns, shower fitments and washbasins pulled from the walls;
• Toilet seats and bowls broken due to heavy wear and tear;
• Curtain rails pulled from walls;
• Skirting boards and plasterwork taken away from the walls;
• Joists damaged due to heavy wear and tear;
• Kitchen units damaged due to very heavy wear and tear.

Assessment and Support Requirements

Crucial to the design requirement of any service for people with ASD and/or challenging behaviours is a robust assessment process. Early in the study it was recognised that the process of care management assessments, which had previously been the principal element of the design process, was insufficient for advising the design requirements of this group. The Council commissioned the Scottish Society for Autism, Robert Gordon and Lancaster Universities to undertake two types of specialist assessment to advise the process in a more in depth way.

The Scottish Society for Autism undertook a number of Adolescent and Adult Psychoeducuational Profile (AAPEP) Assessments. The purpose of such assessments was to provide information regarding individual skills base relating to:
• Vocational Skills;
• Independent Functioning;
• General Leisure Skills;
• General Vocational Behaviour;
• Functional Communication;
• General Interpersonal Behaviour;
• Vocational Skills in the Home;
• Independent Functioning;
• Leisure Skills in the Home;
• Vocational Behaviour in the Home;
• Functional Skills in the Home;
• Interpersonal Behaviour in the Home.

The value of such a specific assessment was to determine where individuals: passed the series of tests/tasks set, indicating that these specific skills were in place; the skills were emergent, therefore with appropriate support and methods of teaching the individual could develop the skills more fully; there was failure to comprehend or tackle the test, indicating that these skills did not exist. This assessment process was used to enable the design of the support requirement, the skills required by support staff and provide input into the care planning process.

• Methods of support and intervention are many and varied, for people with ASD. The study specifically identified two approaches, which informed both the structural and service design requirements, of services currently being commissioned. Both link into the outcomes of the AAPEP assessment process, looking at the development of emergent and existing skills base, as well as means of managing behaviours and the potential associated risks. These two approaches are the SPELL approach and Treatment and Education of Autistic and Related Communication Handicapped Children (TEACCH) concept, which advised the planning process. The aim of the SPELL approach is to ensure continuity and order in the individual with ASD’s life, in order to reduce the effects of ASD and their response to the environment and teaching approach. The approach requires that:
• Structure is in place, ensuring that where possible the removal of unpredictable and unexpected events are kept to a minimum. This enables the individual to be less confused and make sense of their environment;
• Positive attitudes and appropriate expectations are put in place, ensuring that such expectations are pitched to individual need (so as not to cause undue anxiety or boredom), building on individual strengths and skills base;
• Empathetic, trying to view the world from the perspective of the individual with ASD, and designing the service and environment around their needs;
• Low Arousal, the environment needs to respond to the individual needs by being calm and focused. Ensuring that there is not an excess of stimulation, which may include noise minimisation, appropriate use of colour, textures and furnishings. Approach by individual support staff and others need to be essentially non-confrontational, with order and encouragement;
• Links with relatives, health personnel and other stakeholders needs to be robust. Good communication between all parties is essential to the well being of the individual with ASD.

The concept of TEACCH can co-exist with the SPELL approach. TEACCH, while based on child education has been applied to service provision for adults. The primary aim of TEACCH is to help prepare individuals with ASD, to live or work more effectively at home, school and in the community. The concept advocates the principals of:
• Improved adaptation by having defined strategies for teaching skills and modifying the environment to enable this;
• Collaboration between all stakeholders involved in an individuals life, ensuring a continuity of approach;
• Individualised assessment and regular reviewing of the individuals position;
• Structure in teaching methods;
• Cognitive and behaviour therapy;
• Training for all those who support the individual, and not just for the specialist.

Linked to the Scottish Society for Autism and care management assessment process, the need for environmental assessment was also identified. Advice was sought from Robert Gordon and Lancaster Universities, regarding the potential use of assistive technology in enhancing support for individuals (see below). It was recognised that the link between cognition and behavioural response, for people with ASD, presented the need for supporters to develop alternative methods of supporting and teaching, than with other service user groups. Service response needed to be holistic and offer integrated supports for home, leisure, day and employment opportunities, with inclusion into community based services while being actively encouraged being pursued with cognisance to the individuals needs and abilities to make such connections with their community.

Design Requirements

The combination of cognitive impairment and behaviours to environmental stimulation as indicated above, require to be a major factor in the design of appropriate accommodation and support services. Advice provided by the National Autistic Society and the Scottish Society for Autism, regarding standards for accommodation, indicates the need to provide for clearly defined space, which is identified for specific functions and is not over furnished. It has been advised that there is a clear distinction between kitchen, dining and living spaces, with space to move freely thus allowing for a wide range of movements including pacing and jumping. In modern accommodation this may prove to be a challenge to planners, with the trend to have multi-purpose areas such as kitchen/dining rooms or space to eat in the living room. There are ways in which to create individual areas within one room that may result in a room being used for more than one purpose e.g. use of flooring to define an area; a bay window; or a counter across a kitchen creating a distinct split of function in a room. However use of such methods will still require additional available space to achieve such a differentiation.

The use of technology to enhance the support requirements of people with ASD and those who may present challenging behaviours, was seen as a proactive way of assisting individuals to live as independently as possible, minimising risk and enabling the provision of qualitative support rather than intensive care. Using the above described models of intervention, where the individual skills base is developed in a conducive environment, and including a basic technological structure would enable service users to attain increased levels of independence. The system contains six main elements:

• A simple alert system to detect activity patterns of residents when they are alone in the flat.
• An extensive fire system to pre-warn support staff in the event of a fire and not cause panic in the residents which automatically turns off electricity to cooker and plugs in the kitchen and front doors of flats would unlock, allowing staff easier access.
• A ‘staff attack’ system to allow support worker three levels of call for assistance in the event of requiring assistance in daily tasks through to an attack situation.
• A simple security system to detect when doors and windows are opened which allowed staff to determine which doors and windows to monitor.
• Isolation of hot and cold water by support staff to prevent residents from compulsively drinking.
• Automatic locks on external doors and flat front doors that allow monitoring of people in and out of the building as well as in and out of individual’s flats.

The systems were integrated and connected to a series of displays placed in support worker accommodation. A dedicated central computer, situated in the staff office space allows for all the data to be recorded and staff monitoring alerts remotely within the building. This also allows staff to determine and plan future care initiative with residents as the person’s activities can be called up for a required period. Where there are changes in an individual’s patterns of behaviour, the system enables analysis of response and assists the process in identifying trigger points of adverse stress, ensuring appropriate and responsive intervention. As a socio-technical system, it was also important to make the system as easy to use by staff and as robust as possible such that residents are unlikely to feel that they are being monitored or that there are odd looking ‘devices’ in their domestic spaces.

The systems were predominantly hard wired as this made things easier to integrate into a computer programme although the staff attack system uses infrared modules that are clipped on the support workers belts and these alerts are recorded on the computer system as well as being able to be transferred by radio frequency to pagers given to designated support workers. Wherever possible, ‘off the shelf’ systems were utilised throughout the projects so that non-specialised electrical workers could undertake maintenance of the system.

While basic system includes the above, there is a need for each potential service user to have their individual technological needs assessed. This has involved Robert Gordon and Lancaster Universities establishing working relationships with various members of the multidisciplinary team, service users and their relatives, to enable specific design requirements. The systems are designed to respond to changing need with capacity to either add or detract as the individual support plans require. During the process of the study a number of similar systems have been installed into Housing with Support settings in Aberdeen, with tenants responding well to the inclusion of technology into their homes. One service user has been reported as using the system to determine when he requires support and when he wishes to be alone in his flat, although the system was originally installed as a risk management tool. Thus such technology may enable self-determination and tenants can be encouraged to push the boundaries of the system to enable greater choice within and use of their own homes.

Many people with ASD find difficulty in social interaction and sharing of personal space. Unlike many other service user groups, social interaction is not always possible in socially inclusive ways. Public places may provide for an excess of stimulation, raising anxiety levels and be detrimental to the physical and emotional welfare of the individual. Some may wish to access situations, which enable social interaction, however they need to be in control of the situation, having the space to watch from the sidelines or avoid physical contact from others in the room. This type of need combined with the potential for behavioural outbursts, whether this be complex whole body movement or physical threats and the cognitive response to room usage, requires a higher than average space standard. This will ensure that the individual has a positive response to their living environment, potentially reducing adverse behavioural responses and minimise the risks to service user and their carers.

In relation to the physical design of accommodation, it needs to be noted that visual thinking, rather than abstract methods of thinking, is a feature, which has been much-researched (Grandin T, 1995; Hurlbert RT, Happe F & Frith U, 1994).

• Additional spaces for gross movement activity. Service users with ASD often require additional space both in respect of room and corridor sizes and the height of the ceiling. “I do stunts in the hall…often I don’t stop jumping and twirling around…I also love leaping around the furniture" (Hall, 2001). Service users have been observed presenting running and jumping type behaviours, hitting out at walls and ceilings, or people who inadvertently get in the way;
• The physical structure of the property requires being robust, ensuring that the risk to injury to the occupants, support staff and damage to the property is kept to a minimum. This will essentially require that internal walls and ceilings are able to withstand excessive wear and tear, usually by reinforcing or traditional build;
• Sound proofing is required, ensuring both the exclusion of noise from within, due to noisy outbursts and the noise that may come from external sources, which detract individuals and may create undue anxiety;
• Noise from heating systems and extractor fans may be a source of intolerable noise for some residents, due to noise sensitivity. Where possible designs which avoid use of disruptive electrical based systems, should be considered e.g. Passive Vents rather than extractor fans;
• Fittings that enable wall spaces to remain free of attachments should be sought e.g. underfloor heating rather than radiators, boxed in cisterns etc. Curtain rails should be avoided with an ideal solution being the use of blinds between double glazed windows, avoiding any obvious attachment to the wall;
• Lighting should be recessed, again ensuring that fitments are as flush with the walls and ceilings as possible;
• Paint work requires to washable and hard wearing, with colour schemes being sensitive to individual requirements;
• Bathroom and kitchen furnishings require to be robust, avoiding damage due to heavy wear and tear;
• Inclusion of communal space to enable access to social inclusion either as an observer or on a low-key basis, as per individual need, would be beneficial, enabling tenants/service users to access an environment responsive to their needs, which may vary according to their levels of personal anxiety.

Conclusions

Providing a living environment suited to people with ASD and those whose behaviours challenge their environment and others, requires considerably more planning than for other service user groups. Lack of recognition of this, by professionals and planners in the past, has focused on the levels of “care” and risk management that people with ASD require, using traditional models of accommodation and support in response. The limited structure of the assessment tools and the standard planning processes utilised for meeting support needs has had a clear impact on the enabling of maximum level of independence and quality of health and social support that people with ASD often receive.

The use of specialist assessment tools such as AAPEP and assistive technology, provides for a more appropriate foundation on which to base the planning process, clearly identifying individual skills and emerging skills, and methods on which to begin the planning process. The support package and the environment in which individuals are going to live must not be seen as being mutually exclusive. Rather for this particular group of people it is essential that such planning is co-terminus.

Support and enabling individuals to develop skills of independence needs to be an important key feature of the planning process. There are established approaches to provision of such support that require to be informed by the assessment process. Support, equally needs to be viewed in an holistic way, with the environment, technology and the stakeholders providing the package of support essential to the individuals life requirements.

As demonstrated above the environment requires being responsive to the individual needs. Key areas are the additional available space, arrangement and robustness of accommodation, combined with attention to specific detail of fitments, furnishings and support services. Technology may be used to assist tenants to manage more independently in their living environment, as well as enhancing the effectiveness of their individual support package. Long-term viability of the structure of the accommodation is essential from the service user, provider, commissioner and funder’s perspective, ensuring that the individual is supported in an appropriate environment that actively encourages personal growth and ensures good health and well-being.

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