Supporting Engagement in Everyday Life at Home and in the Community: Active Support

Abstract

Many people with intellectual disabilities live in poor-quality supported accommodation services where they spend a significant part of their day disengaged—doing nothing. It is clear that it is the quality of staff support rather than the number of staff that makes the difference and that all people with intellectual disabilities can be engaged for much of their day. Engagement in meaningful activities and social interactions is a fundamental prerequisite to a good quality of life. When staff consistently use a practice known as Active Support, people with intellectual disabilities have higher levels of engagement and a better quality of life. This chapter lays out the essential elements of Active Support and the frontline managerial practices and organisational features necessary to embed it in services. Finally, it considers the connections between Active Support and other person-centred practices, such as support planning, positive behaviour support, and supported decision making.

Individualised funding is a primary mechanism for ensuring people with disabilities can access the individual support they need to have a good quality of life. Schemes such as the Australian National Disability Insurance Scheme (NDIS) enable eligible people to purchase support from the providers they choose. Such schemes have been most successful for people with resourceful social networks, who are able to advocate for themselves and direct their own support (Mavromaras et al., 2018). They have been less beneficial for people with intellectual disabilities, many of whom do not have strong informal networks and rely on others to assist in exercising choice and directing their support. For this group the quality of paid support is critical to their engagement in everyday life and their physical, social, emotional, and intellectual development.

Ten years of individualised funding in Australia has changed little for some of the estimated 25,000 adults with intellectual disabilities who live in shared supported accommodation services (group homes) with four or five other people. Most are unlikely to have chosen their accommodation, the people they share their home with, their service provider or support workers. Many experience a poor quality of life without the skilled support they need to be engaged in everyday activities at home or in the community. Their lack of engagement means they have minimal opportunities for individual development or exercising control.

Despite the 24-hour presence of staff, some people living in group homes spend most of their waking hours disengaged—doing nothing. For example, an Australian study found that people with severe intellectual disabilities were engaged for between 0% and 57% of their time and those with milder intellectual disabilities for between 3% and 95% (Bigby et al., 2019). Indeed 52% of the sample received no assistance to be engaged, and only 9% received assistance for 14% or more of the time—the benchmark for good support (Mansell & Beadle-Brown, 2012).

Consistently it is people with more severe and profound intellectual disabilities—those who need more support to be engaged—who spend longer periods disengaged and who are less well supported. Below are snapshots from observations in group homes of people with severe or profound intellectual disabilities and their support workers. These and the other examples in this chapter are from unpublished data collected as part of an ongoing longitudinal study of the quality of support in group homes (Bigby et al., 2020b). All the names are pseudonyms.

The support worker and the gardener provided some hand-over-hand support for Chris to hold the leaf blower and rev the motor and gave him some positive reinforcement such as “oooh, can you feel that?”. Chris appeared overwhelmed with joy at being able to do it. This lasted a brief moment. Chris spent the next 10 minutes just watching the gardener from a distance, before he left the property. The support worker went inside and Chris was left alone in the backyard for another fifteen minutes before being asked if she wanted to watch television. She said “yes – cricket”. There wasn’t any being telecast that day, so the support worker suggested Chris come and assist with dinner. Chris was wheeled to the kitchen. For a few brief moments Chris was supported with hand-over-hand assistance to engage in the meal preparation. She was supported to place things in a bowl and hand items to staff. But there were many missed opportunities to engage Chris. For example, when the support worker was chopping up chicken Chris reached out towards him and was keen to be involved. She was told “no, you can’t use the sharp knife I’m afraid”. She spent a lot of time just watching.

The two support workers on shift spent an hour doing paperwork at the dining table, answering emails, counting money and checking their phones. While this was happening, Scott, Joe, and Roger sat in the lounge nearby; they paid attention to the TV intermittently but spent most of the time just sitting and looking around the room. A fourth person, Josh, sat at the dining table, repetitively playing with his fingers. When the workers finished the paperwork they prepared dinner. While they were doing this Josh continued to sit at the table tapping his fingers or looking around the room. When the dinner was ready, the workers plated it up and brought the bowls to the table. One support worker sat next to Roger and fed him dinner while the second one sat next to Joe and fed him. Scott and Josh independently ate their food. The staff chatted to each other about their co-workers and other aspects of their job, such as their leave entitlements, while they were feeding Joe and Roger. After dinner, the workers cleared the table. One support worker washed the dishes while chatting to the other. Roger stood next to him and watched while he washed the dishes.

In contrast, some people living in group homes are engaged for significant periods of time and well supported to participate in activities and social interactions that are meaningful to them.

The support worker sat on the floor next to Katie and read out loud the directions on the muffin mix box. The support worker asked, “Do you want to come and help me make these? This is what we are going to make” showing her the picture on the front of box. Katie showed no interest, so the support worker said, “I’ll put all the ingredients in the bowl and you can help me stir, do you want to do that?” Katie’s expression indicated she was interested but she pulled back when the worker started to help her get up to go to the kitchen. The support worker took the bowl to Katie and sat with her on the floor. She placed Katie’s hand on the spoon, put her own hand on top and encouraged Katie to stir. The support worker said to Katie, “It’s still a bit lumpy, what do you reckon?” and continued stirring. She asked Katie if she wanted to taste the mixture, and put some on the spoon and put it to her mouth. Katie initially pulled away, but when asked again she brought her mouth to the spoon and tasted the mixture. When the support worker said, “Do you want to taste some more?” and again placed the spoon near her mouth. Katie smiled and had another taste.

The support worker was sitting at the table in between John and Janet, and assisting Janet to eat her breakfast. The worker noticed that John was disengaged and said to Janet “shall we put some music on for John”. Janet smiled, and the worker said, “Yeah, good idea, eh”. The worker turned on some rock and roll and said to John “There we go, mate, your favourite”. John started to appear a lot more alert and gave a small smile. His physical appearance was changed for the next 15 minutes. At one point John started making a clicking noise, to which the support worker said “Are you singing?” He then clicked louder and began to make snorting noises too. All the while, grinning ever so slightly and rocking his head.

These stark differences in the engagement of people living in group homes are not due to the number of staff available but to the quality of staff support and their use of the evidence-informed practice of Active Support. Sometimes, known as Person Centred Active Support, drawing attention to individual tailoring and responsiveness of support, Active Support is an enabling relationship between staff and the people they support whereby staff provide.

enough help to enable people with intellectual disabilities to participate successfully in meaningful activities and relationships, so that people gain more control over their lives, gain more independence and become more included as valued members of their community irrespective of the degree of intellectual disability or presence of extra support needs. (Mansell & Beadle-Brown, 2012, p. 14)

This chapter describes the rationale for the practice of Active Support, presents evidence about its impact on the quality of life of people with intellectual disabilities, and lays out its essential elements. The chapter reviews evidence about the frontline managerial practices and organisational features necessary to embed Active Support in services. Finally, it considers relationships between Active Support and other forms of more specialist support.

Why Engagement Is Important

Group homes developed in the 1970s to replace large institutions that congregated people with intellectual disabilities together away from communities. Until that time institutions had been the only alternative for people with intellectual disabilities who could not live with their families (Monk et al., 2023). Much has been written about the dehumanising conditions and culture of institutions that were characterised by rigid routines, block treatment, depersonalisation, and social distance between staff and people with intellectual disabilities.

Even in poorer group homes the culture is more person centred and flexible than that found in institutions (Bigby et al., 2012). For example, rather than the shared dormitories of institutions, people in group homes generally have their own bedroom. Group homes offer opportunities to tackle inactivity or disengagement, features of institutional life that posed significant obstacles to personal development—if people are doing nothing, it is almost impossible for them to have any choice or control over their lives. Engagement, the opposite of inactivity, is a precursor to quality of life. For example, personal development is only possible if individuals participate in new experiences. Interpersonal relations and social inclusion depend on interacting with other people; physical health requires activity; self-determination relies on people having options from which to choose and choices being respected; and emotional well-being stems from participation and relationships (Mansell & Beadle-Brown, 2012, p. 39).

People with severe and profound intellectual disabilities need skilled support to be engaged. Without support they are likely to remain disengaged and passive, as they do not have the skills or motivation to generate their own engagement. People with less severe intellectual disabilities are more able to engage in activities by themselves but often need support to explore new experiences and expand their repertoire of activities, develop their skills, and participate in more complex or demanding tasks.

Engagement in meaningful activity leads directly to increased competence and independence of people with intellectual disabilities and indirectly to more respectful and positive attitudes from staff and others. Researchers in the early group homes demonstrated that when people moved from institutions they could be supported to be engaged for much longer periods of time if staff used the opportunities for engagement offered by the many household tasks that needed to be done in group homes—for example, cooking, shopping, laundry, cleaning, gardening. Their work suggested that staff in accommodation services should facilitate people’s engagement in everyday activities and relationships and that.

instead of doing all the housework as effectively as possible, and then attempting to occupy clients for long periods of each day with toys, staff could perhaps be organized to spend most of the day doing housework with clients, arranging each activity to maximize the opportunities for clients with different levels of activity to participate. (Mansell et al., 1982, p. 603)

The benefits of the time spent engaged in such tasks potentially outweigh the benefits from relatively short periods of leisure, community access, or therapy programmes delivered separately from group home support.

Significance and Essential Components of Active Support

UK researchers developed and refined Active Support as a practice for frontline workers to support engagement. Initially developed in the context of group homes, Active Support is also relevant for staff who support people to use public facilities, such as swimming pools or libraries or to participate in community groups, employment, or volunteering (see Chap. 4). A significant body of research shows the positive impact on people with intellectual disabilities when staff use Active Support. This includes:

• Increased engagement in meaningful activity and social interaction;

• Increased assistance from staff;

• Improved skills, personal development, or adaptive behaviour;

• Improved choice, self-determination, and autonomy;

• Reduced challenging behaviour; and

• Reduced mental health issues such as depression (see Mansell & Beadle-Brown, 2012 for summary).

Active Support is the only strongly evidence-informed practice for support workers. The benefits of its use are overwhelming. It should be the foundational skill set of all support workers who work with people with intellectual disabilities, as it is these staff who spend the most time with people and deliver the bulk of day-to-day support which influences people’s levels of engagement. Active Support is the way support workers should work all the time: how they should provide support and how they should interact with the people they support. It is not something that is scheduled for particular times of the day or parts of their shift or only relevant to some of their tasks.

Active Support is underpinned by theory and empirical evidence. It brings together into one practice knowledge, values, and skills that are often taught separately. Rights-based values and knowledge about things such as task analysis, communication, behavioural reinforcement, and learning are translated into this specific person-centred practice that can be taught to support workers regardless of previous education and training. It is the responsibility of disability service providers who work with people with intellectual disabilities and their families or advocates to ensure Active Support is embedded in organisations as the foundation skill of all support workers and frontline managers (see Bigby & Humphreys, 2021, 2023).

Active Support has two components: the way workers provide support and the way they interact with the people they support. These are broken down further in Table 7.1.

Table 7.1 Components of active support

These components are captured by the catchphrases of the four essential elements of Active Support taught in training (see Fig. 7.1). Each of the essentials are described below and illustrated by short videos in free online Active Support training resources (Bigby & Humphreys, 2023).

Fig. 7.1

Four essentials of Active Support

Every Moment Has Potential

There are opportunities for workers to support a person to be engaged in many tasks, activities, and social interactions that happen naturally during the day. Workers should be continuously alert to opportunities to support engagement. One way to do this is breaking down what might appear to be complex activities into parts and thinking about the various steps of the activity that a person might be involved in. A good motto for workers is never to do a task alone but rather think how they can support a person to participate. This might be anything from cooking dinner, going shopping, playing a game, to buying a ticket at the cinema, or ordering a meal. Creating opportunities for conversations or social interaction directly with the person or supporting their interactions with others such as family, coresidents, or neighbours is also part of using the potential of every moment.

They unpacked Bridget’s bag together. The support worker said, “you can pop these in the bin”, pointing to the yoghurt containers and “I’ll give this a bit of a wash”, pointing to the dish. Bridget put some yoghurt containers into a bin while the support worker rinsed a dish in the sink. The support worker assisted Bridget to select items and pack her lunch for the next day, using verbal prompts for each step. “Do you need some fruit?” “Do you think that’s enough?” “What type of yoghurt do you want?” When this task was finished the support worker chatted to Bridget about what she had done that day, and what was happening tomorrow. … A bit later the support worker prompted Bridget to find her bed linen that had been washed, asking her if she wanted to see if it was in the laundry. Bridget retrieved the washing from the laundry and began folding some towels and sheets in the lounge room. Bridget slowly folded the washing for about 40 minutes, while occasionally stopping to watch television or talk to the workers. While Bridget was folding, the worker began a conversation about Australian rules football. She stopped folding the washing for a while and together they looked at a printed calendar of AFL fixtures to figure out which games were coming up.

Graded Assistance to Ensure Success

There is no one way to provide support—rather support must be individualised, tailored to the person and the activity or social interaction. Workers must provide the right type of assistance for an individual to succeed. If they provide too little assistance or the wrong type the person may not succeed. If they provide too much assistance they take away opportunities for a person to participate or develop their skills. Ways of providing assistance include asking, instructing, prompting, gesturing, demonstrating, guiding hand-over-hand, or simply encouraging the person to participate and then standing back and giving them the opportunity to do it at their own pace.

The support worker asked Kay if she wanted a hot drink or a cold drink, holding up the kettle and a glass as she did so. Kay indicated a cold drink by pointing to the glass. The support worker said, “okay, how about you get the milk out?” She prompted Kay by pointing to the fridge and saying “get the milk”. Kay opened the fridge door and took the milk from the fridge door and put it on the bench. The support worker provided hand-over-hand assistance to Kay so she could pour the milk into the blender. There was a brief moment where a small amount of milk fell onto the floor, but this was met with good humour and reassurance from the support worker. Then the support worker held up two tins of flavouring and asked which one she would prefer, naming the two flavours as she showed her. After Kay had picked a flavour, the support worker pointed to the drawer and said “can you get out the spoon”. Kay did so and then the support worker opened the lid of the tin with the spoon and supported Kay to scoop out some powder and put it in the blender. She gave Kay hand-over-hand assistance to push the button that started the blender.

Maximising Choice and Control

Workers must offer choices and respect preferences to increase a person’s control over their life. Communication is important to offering choices and understanding preferences. Everyone has preferences but may express them differently, using words, actions, or facial expressions. For people to exercise choice, workers must offer more than one option. They might use words or gestures; show a person objects, pictures, or a video; or assist a person to have new experiences to expand their knowledge about what’s available. Workers need to give the person time to communicate, check they have understood, and act on their expressed preferences.

The support worker sat with Angela in the office and helped her plan a holiday. They sat near a computer and the worker talked to Angela about the various cities she could visit. Angela said she would like to go to Sydney. The worker asked her when she wanted to go, saying “May, June, July, August”. Angela replied, “August.” The worker asked if Angela was sure she wanted August rather than May, June or July. Angela nodded. The worker asked Angela what she would like to do in Sydney, and Angela replied “go around Sydney.” Realising that her open-ended question was too broad, the worker began to tell Angela about the different places she might visit, the Opera House, the ferry, the art gallery. She showed Angela a YouTube video of a Sydney ferry ride and they watched a video showing a range of Sydney landmarks. The supervisor then said the name of the landmarks they had seen, followed by “yes/no?” and Angela replied, indicating whether she wanted to visit that place. The support worker also used her knowledge that Angela liked to watch the TV show Sunrise and suggested that she might want to visit the studio in Sydney where it is filmed.

Little and Often

Some people can only sustain engagement for short periods, as they find it difficult to concentrate and need to take breaks. Workers should recognise this and support a person to dip in and out of activities as it suits them. They should ensure a person can return to an activity if they wish by avoiding packing up or finishing up an activity too soon.

Many people also need time to become familiar with a new activity before sustaining it for a longer period or deciding if they enjoy it. Workers need to offer new activities more than once to give people a chance to get used to them before making judgements about them.

The supporter worker was prompting Rod to use the tongs to turn over the sausages on the stove top. Rod enjoyed this activity for about 5 minutes and then put down the tongs and walked outside to the garden. A little while later the support worker carried the tongs out to Rod and said, “Dinner’s starting to smell good. You want to come in and turn the sausages some more?” Rod did not reply and the worker said, “When you’re ready. Come in when you’re ready.” After five minutes she went out again and asked if he wanted to come in and get gravy mix? You come in when you’re ready.” Rod came into the kitchen smiling. The worker commented on his smile and told him the gravy mix was in the pantry. He opened the pantry and when he seemed to struggle to find the gravy mix, she added, “Top shelf.” He got the gravy mix from the pantry and the worker praised him, saying, “Good man.”

Active Support is not only about providing support using the four essentials but also about the way workers interact with the people they support, showing respect and warmth and where appropriate using humour. Although not one of the four essentials, knowing a person well is important to the quality of Active Support workers provide. It is difficult to provide just the right amount of assistance unless you know a person’s skills, or to offer and respect choices unless you know how a person communicates. Spending time with a person is the best way of getting to know them but may not always be possible. Workers can get to know about people quickly by talking to others who know them well; reading file notes, one-page profiles, communication dictionaries or watching quick video snapshots created through digital technologies.

Active Support is a staff practice, not a set of procedures to be learned or ticked off by workers. Good Active Support looks different for each person and each activity; sometimes a worker prompts a person to be engaged and stands back, and at other times the worker provides hand-over-hand assistance to complete a task. Working as part of a team providing support to a person helps to ensure support is consistent and information shared about their preferences. Imagine what it might be like to be supported to clean your teeth or make a cup of tea in a different way every day. The quality of support a person receives every day contributes to their quality of life: it cannot simply be put on hold because there is a new worker or managers have more pressing demands on their time.

Support workers can be trained in Active Support, but training alone is not sufficient; workers need to continue to develop their skills and work as part of a team in an environment where good Active Support practice is expected and valued. Creating such work environments is the responsibility of organisations that employ workers and deliver services to people with intellectual disabilities.

Embedding Active Support in Organisations

Australian research has identified the predictors of good Active Support practice, demonstrating the organisational features that need to be in place to embed it in an organisation. These are illustrated in Fig. 7.2.

Fig. 7.2

Organisational predictors of good active support

Staff training in Active Support and their confidence in managers are important predictors of Active Support, together with the number and mix of people living together. Support workers can learn the basics of Active Support in a classroom or online training. They also need ‘hands on training’ in their workplace with the people they regularly support, from an experienced trainer, to apply what they have learned to practise. Hands on training is important in assisting workers to tailor Active Support to the abilities and personalities of the people they support. Research shows people with higher support needs consistently get poorer Active Support. This suggests that support workers who work with this group find it difficult to apply Active Support and may need additional hands on training. There should be no more than six people living together in a house or one site, and they should have similar support needs. Other key predictors of good Active Support are strong Frontline Practice Leadership and senior organisational leaders who value practice.

Frontline Practice Leadership

Frontline Practice Leadership is a particular type of frontline management and is necessary to ensure good Active Support occurs all day every day (Bigby et al., 2020a). It is a set of five tasks incorporated into the role of front line managers. These are represented in Fig. 7.3 and described below. They are also illustrated by short videos in free Frontline Practice Leadership training resources (Bigby & Humphreys, 2021).

Fig. 7.3

The five tasks of Frontline Practice Leadership

Focussing Staff Attention on the Quality of Life of the People Supported

This task sets workers’ expectations about their work, ensures they understand the concept of quality of life and see their role as supporting people to have a good quality of life (see Chap. 2, which explains the eight domains of quality of life). It can be challenging for workers to put aside their own preferences when they think about opportunities for activities or social interactions they create for people or the types of food, music, or décor they offer. Understanding the subjective nature of quality of life, that a good life looks different for each person, helps workers to focus on the individuality of each person they support. This keeps workers focussed on what is happening for the person and helps them remember that everyone no matter what their disability can have a good quality of life with the right support.

Supervising the Practice of Each Staff Member Individually

This task guides and develops workers’ practice of Active Support. It is one of the most difficult and often avoided task for practice leaders, as it requires preparation, reflection, problem solving, and at times difficult conversations. It is more formal and lasts longer than the more frequent moments of ‘observing staff, giving feedback, coaching staff and modelling good practice’. Practice leaders review workers’ performance in supervision, giving them opportunities to reflect on their practice and discuss how it might be improved. Practice supervision draws on many generic management skills—such as developing rapport, good communication, avoiding blame, and using open-ended questions—but is focussed on the quality of the worker’s Active Support practice.

Allocating and Organising Staff to Provide Support

This task is not about rostering workers to be on shift. Rather, it is about shift plans that give workers a sense of how they are going to organise their time and whom they are going to support and how. Having a shift plan helps teamwork and maximises the support available to each person. Shift plans capture information about each person’s regular pattern of activities and the sequence of events likely to happen during a day, such as what time each person normally gets up. They provide basic information about how each person needs to be supported with their regular activities, such as knowing that a person makes their breakfast but needs verbal prompts to do so. Shift plans can be written collaboratively, but practice leaders are responsible for keeping them up to date, ensuring they are used by workers to guide their use of time on shift and regarded as a flexible blueprint depending on preferences of each person being supported that day.

Observing Staff, Giving Feedback, Coaching Staff and Modelling Good Practice

This task is about continuously improving the quality of staff support. It gives workers opportunities to talk about their practice and get feedback about what is working well and not so well. This means that workers are not left alone to set their own standards for support. To do this task well, practice leaders need to be regularly present in services and spend time observing workers providing support. They should not rely on workers’ own written or oral accounts of their practice, which are often inaccurate or lack detail. Regular presence in a service also gives practice leaders opportunities to actively demonstrate or model how to adapt the essentials of Active Support to the people a worker supports. Skilled practice leaders enable workers to discuss their own perceptions of their practice first and problem solve with them, thus also developing workers’ own self-reflective skills.

Facilitating Teamwork and Team Meetings

This task is about sharing information and knowledge about the people supported to generate ideas for new activities or ways of providing support, sharing what works and helping to ensure consistent support from team members. Like supervision, effective team meetings need preparation and good communication. If run well, team meetings provide opportunities to review and discuss the quality of life of each person supported, share experiences and examples of good practice, establish consistency across staff practice by agreeing how support will be delivered, reinforce shared values among staff, clarify key expectations of workers, and shape team culture (see Chap. 13).

Senior Organisational Leadership That Values Practice

From research, we know that Active Support is predicted by the values of senior organisational leaders who set expectations about the importance of practice and create sustainable structures and processes for the tasks of Frontline Practice Leadership and staff trained in Active Support (Bigby et al., 2020b). While paperwork detailing organisational intentions are necessary, it has little impact on what staff actually do. Commitment to putting in place structures and processes for delivering Frontline Practice Leadership or organising training is more influential on practice than paperwork. Shared language and understanding of practice among senior leaders are important to embedding good Active Support. It leads to collective responsibility across senior executives, with each executive recognising the potential influence of their area of work on practice, from the management of finances and accounting to human resource functions.

Organisational structures should ensure that frontline managers  have the time, authority and skills to create the conditions for teamwork and continuous practice improvement and to keep the focus of workers on the quality of life of the people being supported. Ways of structuring tasks of Frontline Practice Leadership differ between organisations influenced by the number of people supported in each service, the complexity of their support needs, the skills of direct support workers, and the overall management structure of the organisation. Job titles, span of control, and responsibility for other tasks may differ, but the pivotal issue in structuring Frontline Practice Leadership is ensuring those with responsibility for these tasks have time to do them well, spend time in services, and are close enough to the frontline to know the workers and the people they support. It is also important they have clear expectations about their role, and are supported and trained in Active Support and Frontline Practice Leadership.

While paperwork such as behaviour upport plans, medication records, or incidents reports are necessary, some paperwork more reliably serves its purpose than others. The volume of paperwork, both hard copy and digital, has increased exponentially since the first group homes were established. It is often seen by support workers and practice leaders as burdensome and detracting attention from practice (Quilliam et al., 2018). In designing internal quality systems and audit processes, senior leaders should heed the advice of researchers that observation is a more effective way of capturing and making judgements about the quality of practice than paperwork (see Chap. 14).

Dangers of Being Oversupported

As suggested earlier, skilled use of Active Support, particularly with people with mild intellectual disabilities, can mean support workers prompt a person to be engaged and then stand back, leaving them to start and complete an activity. If the right type and amount of assistance is not provided (i.e. graded assistance to ensure success), a person may get more support than they need, which takes away their independence. Being oversupported, like being undersupported, stifles personal, intellectual, and skill development. This is illustrated in the example below:

Brian works full time in a logistics company. He is close to getting a karate black belt. When he arrived home, he told the worker he was not going to have the dinner with the other people in the house and would make something else for himself. After getting changed, he went into the kitchen and while the others were having dinner chatted to the support worker and scrolled through his mobile phone. He complained to the support worker about the processed meat in the meal she had cooked. The support worker, who had only met Brian once before said, that she could make him spaghetti carbonara. She made some pasta in a fry pan while Brain sat at the dining table, scrolling through his phone and chatting. When it was cooked, she brought it over to him. When he finished eating, he went into the kitchen, looking for the coffee. As he was spooning the coffee into the cup the support worker said, “No, that’s too much…go and sit down, I’ll do it for you”. Brian went into the lounge and while he drank his coffee watched the news, commenting briefly to another support worker about one of the stories about the weather. Brian then went to the kitchen and loaded the dishwasher. He unwrapped a dishwashing tablet and placed it in the dishwasher. As he was heading to the bathroom to get his medication, the support worker asked Brian to remind her at 8 o’clock that he needed to have his medication again. He told her that already had an alarm set in his phone.

Brian’s situation exemplifies the way that well-intentioned but poorly skilled staff can obstruct a person with mild intellectual disability from being engaged in their own life. It also raises two further issues. First, the suitability of group home for a person like Brian who does not need that level of support. Evidence suggests that approximately 30% of people living in group homes have the same skills as people living more independently and do not need 24-hour support (Bigby et al., 2018). Second, whether Brian and others in similar situations are supported to consider alternatives to group homes. Individualised funding holds the potential for people to take their funding elsewhere and try other types of accommodation. Yet to make this a reality many people will need independent support to explore and make decisions about where they choose to live (see Chap. 11).

In Australia there are an increasing number of housing options, with differing levels of support available, where people can live alone or with one or two other people of their choice. These include, for example, single-person apartments scattered across one level in an apartment building which has 24-hour on-call support available shared amongst a number of people, drop-in-support for tenants in private rental or social housing, or separate single- or two-person units on the same site with support shared between units. Notably however, there is little research about alternative housing and support models, but it is clear that the quality of staff support and supervision (the use of Active Support and Frontline Practice Leadership) will remain a key factor whatever the model of housing.

Active Support and Other Person-Centred Practices

People with intellectual disabilities will spend more time engaged in meaningful activities and social interactions and have a better quality of life if support workers use Active Support as the foundation of their practice. Service delivery organisations are responsible for creating an environment where workers are expected to use Active Support, focus on quality of life, develop practice skills, and work as a team. Although use of Active Support is most common by staff in supported accommodation services, it can be applied to other contexts, such as support to people in their own homes, in employment, on representative bodies, or in community, self-advocacy, or peer support groups. Staff use of Active Support is also good for staff morale and thus potentially a bonus for organisations in terms of increased staff retention (Rhodes & Toogood, 2016).

There are strong synergies between Active Support, Support Planning (see Chap. 8), Supported Decision Making (see Chap. 11), and Positive Behaviour Support (see Chap. 9). For example, a goal may be a person is engaged in meaningful activities or social interaction for at least seventy percent of their time at home, a support worker’s knowledge, gained from using Active Support, that a person enjoys cooking, might be information collected about the person as part of planning and contribute to discussion of a goal to develop cooking skills further. In turn, goals in support plans, such as moving to live alone, can help workers to think about the opportunities and experiences they offer to a person using Active Support on a daily basis (Mansell & Beadle-Brown, 2012).

There are strong connections between the strategies used in Active Support to maximise choice and control and strategies used in supported decision-making practice. These include, for example, attention to communication, listening and engaging, breaking things down, and creating opportunities to experience options and preferences (Douglas & Bigby, 2020).

Use of Active Support can reduce a person’s challenging behaviour and their need for specialist behaviour support. As discussed in Chap. 9, the quality of services and use of evidence-informed practice, such as Active Support, form part of the system-wide and multi-component approach of Positive Behaviour Support. Indeed, some organisations represent Active Support as the base of a pyramid of interventions for people with challenging behaviour. Also, the findings from functional behavioural assessments conducted as part of Positive Behaviour Support can be valuable for support workers to increase the effectiveness of their Active Support by facilitating more targeted and precise support strategies (Ockenden et al., 2014).

More so than in the past, people with intellectual disabilities use multiple disability support providers. For example, a person living in a group home may get behavioural support services from an external practitioner, support for community access from another organisation, support coordination from yet another, and planning support from a Local Area Coordinator. Collaboration between professionals, workers, and organisations supporting a person is critical to optimising the overall contribution support makes to their quality of life. Good collaboration ensures that the knowledge built up in one organisation about a person is, with their permission, shared with others, and expectations about consistent support, use of Active Support, and teamwork by workers within one organisation are replicated by those in other organisations. Who leads or funds such collaboration is often unclear, but for those involved, understanding the synergies between Active Support, Positive Behaviour Support, Support Planning, and Supported Decision Making are useful starting points.

Finally, in the Australian context, from a regulatory perspective it is important that disability support organisations recognise that the essence of Active Support is included in practice standards. Demonstrating Active Support as the expected practice for delivering support across an organisation through internal audits or independent review will stand organisations in good stead for the formal audits required by the NDIS Quality and Safeguard Commission and give credibility to marketing claims of good practice.

It is not acceptable to argue that people living in group homes cannot have a good quality of life, that some people are too disabled to be engaged in their everyday lives, or that there is insufficient funding to deliver good Active Support. Rather it is the way staff resources are organised rather than their volume that makes the difference, and the evidence suggests it costs no more to provide good support than it does poor support (Beadle-Brown et al., 2021).

Take-Home Messages

• Engagement in meaningful activities and social interactions is necessary for people to have a good quality of life.

• Many people with more severe levels of intellectual disability need support to be engaged. For this group and those with less severe intellectual disabilities, good support can extend the range and complexity activities and develop their skills and interests.

• Active Support is an evidence-informed practice which can be used by staff as a way of supporting and interacting with people at home and in the community. Its use increases the engagement of people with intellectual disabilities, their choice and control, social inclusion, and overall quality of life.

• Active Support combines into one practice knowledge, values, and skills that are often taught separately, including rights-based values and knowledge about task analysis, communication, behavioural reinforcement, and learning. This specific person-centred practice can be taught to support workers regardless of previous education and training.

• Active Support recognises there are opportunities for workers to support a person to be engaged in the many tasks, activities, and social interactions that happen naturally during the day; they must provide the right type and amount of assistance to each person for them to succeed, offer choices and respect preferences to increase a person’s control over their life, and support a person to dip in and out of activities if they need to.

• To successfully embed Active Support in services, staff need to be trained both in the classroom and through hands-on coaching; they need ongoing Frontline Practice Leadership; and they need to be part of an organisation that values and uses a common language about practice and puts in place training and other management structures that reinforce good practice as a key part of its mission.