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 fnished 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 fnd 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 fxtures to fgure 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 foor, but this was met with good humour and reassurance from the support worker. Then the support worker held up two tins of favouring and asked which one she would prefer, naming the two favours as she showed her. After Kay had picked a favour, 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 offce 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 flmed.

#### *Little and Often*

Some people can only sustain engagement for short periods, as they fnd it diffcult 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 fnishing 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 fve 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 fnd 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 diffcult 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 fle notes, one-page profles, 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 handover-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 suffcient; 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 identifed 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.

Staff training in Active Support and their confdence 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

**Fig. 7.2** Organisational predictors of good active support

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 fnd it diffcult 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 fve 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 fve 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 diffcult and often avoided task for practice leaders, as it requires preparation, refection, problem solving, and at times diffcult 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 refect 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 fexible 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 frst and problem solve with them, thus also developing workers' own selfrefective 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 infuential 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 infuence of their area of work on practice, from the management of fnances 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 infuenced 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 frst 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, stifes 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 fnished 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 briefy 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 exemplifes 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 fndings 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 insuffcient 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*

can be taught to support workers regardless of previous education and training.

### References

**Open Access** This chapter is licensed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/ by/4.0/), which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence and indicate if changes were made.

The images or other third party material in this chapter are included in the chapter's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the chapter's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder.

## Healthy Lifestyles and Primary Healthcare

## *Jane Tracy and Teresa Iacono*

Good health is important to everyone. Optimal health is central to being able to enjoy the best possible quality of life. No one can fully engage with, participate in, and contribute to their communities while in discomfort, pain, or distress in physical, oral, or mental health. For people with intellectual disabilities, however, sub-optimal health frequently occurs because of a combination of factors relating to their specifc disabilities and external factors, such as where they live, who supports them, and challenges faced in accessing health systems.

This chapter provides an overview of the implications of poor health and why poor health is often experienced by people with intellectual disabilities. It then focuses on the role of disability support services and individual support staff in contributing to the optimal health of people with intellectual disabilities through the support provided to individuals and in

J. Tracy

T. Iacono (\*)

Living with Disability Research Centre, La Trobe University, Melbourne, VIC, Australia

La Trobe Rural Health School, La Trobe University, Bendigio, VIC, Australia e-mail<EMAIL_ADDRESS>
interactions with the health systems. In this chapter, health is discussed in terms of physical, oral, and mental health as a whole because of the strong connections between them.

## Implications of Poor Health

The implications of poor physical, oral, and mental health are far-reaching. Of greatest signifcance is reduced lifespan. People with intellectual disabilities in Australia die, on average, 27 years earlier than their peers in the general population and often from conditions that could be prevented if identifed and treated early. They experience chronic ill-health resulting in pain, discomfort, reduced function, and hospitalisation and impaired quality of life at much higher rates than people without lifelong disability (Salomon & Trollor, 2019). People with intellectual disabilities also have high rates of dental or oral disease, causing pain and discomfort, diffculty chewing, bad breath, poor self-esteem, and chronic ill-health (Fisher, 2012). Similarly, rates of mental health problems in people with intellectual disabilities can far exceed those found in the general population (Whittle et al., 2019).

Distress arising from physical, oral, and/or mental ill-health is often made worse when the underlying cause or causes are missed. As an example, the onset or worsening of *challenging behaviours* (or *behaviours of concern*) can be expressions of physical, oral, or mental pain or distress, but often is met with behavioural strategies or restrictive interventions, such as medications (Henderson et al., 2020). This response means that the underlying problem goes unrecognised and untreated, with the potential for it to worsen. Another possibility is that the wrong treatments are prescribed, which can create new challenges, such as dealing with the effects of multiple medications as new ones are prescribed to treat the side effects of each added medication (e.g. constipation).

## Disadvantages Experienced by People with Intellectual Disabilities

There are multiple reasons for the poor health of people with intellectual disabilities, such that they experience health disadvantages in comparison with the general population. Contributors to poor health and health outcomes can be thought of in terms of risks associated with the person's disabilities (i.e. intrinsic to the individual) and those associated with factors outside the person (i.e. extrinsic to the individual). An example of intrinsic contributions to health outcomes are those related to specifc syndromes and having a cognitive disability; examples of extrinsic factors include where people live and issues with health systems.

#### *Intrinsic Contributors to Poor Health*

Some health problems experienced by people with intellectual disabilities are related to their underlying disability, especially various syndromes. People with Down syndrome, for example, are more likely to be born with differences in heart and gastrointestinal system development (congenital abnormalities); the development and structure of the teeth, tongue, and oral cavity may lead to higher rates of oral disease; disorders of thyroid function may be present at birth or occur at any time throughout life, as can impairments of hearing and/or vision impairment. People with Down syndrome are at higher risk of gastrointestinal and respiratory disorders including gastro-oesophageal refux disease, coeliac disease, and sleep apnoea. People with Down syndrome are also susceptible to the onset of Alzheimer's dementia at an earlier age than is typical in the general population (e.g. in their 50s rather than 70s); this onset can trigger disruptions to their lives and depression.

Because intellectual disability often occurs with other disabilities, such as cerebral palsy or autism, there may be multiple risk factors for poor health. For example, people who have cerebral palsy are susceptible to gastrointestinal disorders, particularly gastro-oesophageal refux disease and constipation; dental and oral disease and orthodontic issues; musculoskeletal pain and fatigue; hearing and vision impairment; pressure injuries and skin breakdown; epilepsy; and anxiety and depression.

A person's intellectual impairment can also contribute to poor health through the impact on communication and ability to process new information, especially if it is outside their recent experiences or routines. People with intellectual disabilities vary in what they can understand and how they express pain or discomfort. Some rely on people who know them well to notice and report changes that can signal to a health professional possible physical, oral, or mental ill-health. Communication and related diffculties can increase the risks associated with some diagnostic and treatment procedures (e.g. having to undergo a general anaesthetic to allow routine dental procedures) and reduce understanding of reasons for specifc treatments and willingness to follow treatment instructions. For example, someone with severe–profound intellectual disabilities may remove catheters during hospital stays or fail to remain immobile as required to allow wounds to heal.

Communication diffculties also impact health literacy, that is, the capacity to access, understand, consider, and use information of relevance to a person's health, such as public health messages in the media or following health advice by practitioners (Chinn, 2017). Health literacy provides the information needed to alert people to the need for preventative strategies, including seeking routine health screenings and making healthy choices each day. People with intellectual disabilities often do not have easy access to health promotion activities, including regular exercise or nutritional meal planning. They can miss out on health and cancer screening, healthy weight management, sexual health reviews, alcohol and other drug harm reduction discussions, and even vaccination programmes. Poor health literacy, therefore, contributes to poor health and, relatedly, poor quality of life.

#### *Extrinsic Contributors to Poor Health*

Where a person lives, who supports them, and the characteristics of health systems all contribute to a person's health, with problems in any of these areas leading to poorer healthcare in comparison to the general population.

People with intellectual disabilities often live in socio-economic circumstances that limit their choices and undermine their ability to access good healthcare, participate in disease prevention interventions, and make healthy lifestyle choices. Employment can improve these circumstances, and many people with intellectual disabilities can engage in paid work. Employment offers not only fnancial security but also access to social networks outside the home and a sense of belonging and contributing to community. Unfortunately, the rate of unemployment is high for people with disability, in general, and particularly so for those with intellectual disabilities (Dempsey & Ford, 2009).

Where a person lives also includes whether they live in supported accommodation, such as group homes, with family, or in their own homes. People who live in supported accommodation are dependent on disability accommodation service providers for day-to-day decisions that impact their health and for access to healthcare services. Family involvement in these areas will vary between individuals and over time. For some people living in group homes, responsibility for health, including access to healthcare services, can be shared across available family members and disability support workers. However, people with intellectual disabilities often outlive their parents and, as parents age, parents may have their own health concerns and as they move towards the end of their own lives, their ability to support and advocate for their adult children declines. In these situations, the person with intellectual disability will rely increasingly on paid workers in all aspects of their lives, including health.

Disability support worker training does not focus on this role of building and maintaining optimal physical and mental health, nor does it provide information about how to navigate health systems and work with health professionals on behalf of people they support. Training during induction and later when on the job may include only basic aspects of healthcare, such as administering frst aid and medication. In addition, service users may have one or multitudes of healthcare plans, such as those for managing epilepsy, asthma, or eating and swallowing problems. The development, oversight, and monitoring may be by various health or allied health providers, with varying support to direct support workers. As a result, disability support workers are often poorly prepared or supported to care for people with complex health problems or those who are at increased risk of ill-health (Iacono, 2010). This leaves many support workers feeling unclear about their role and how to best support good health and access appropriate health professionals and healthcare, despite often being called upon to assume these responsibilities on behalf of service users in their care. In the following section, the specifc roles of direct support service staff that align with their training and sector expectations of non-health-trained staff are described.

### The Role of Disability Support Workers

Disability support services staff, in particular disability support workers, play a vital role in day-to-day decisions that impact a person's wellbeing. These include recognising and responding to possible signs of ill-health, accessing healthcare, and supporting the person during consultations. This role does not require disability support workers or their managers to have medical or health training or to be knowledgeable about a person's intrinsic risk factors (such as knowing that people with Down syndrome require regular thyroid checks). Rather, fulflling this role requires disability support workers to draw on principles of person-centred care and advocacy and to have good health and mental health literacy as is expected in the broader scope of disability support. The discussion that follows focuses on the role of workers and providers supporting people in group homes, although some of the material also applies to people living independently who still need support with their health.

#### *Support in Making Day-to-Day Decisions that Promote Health and Wellbeing*

The extent to which disability support workers in group homes can help service users make good health decisions will depend on their own health literacy and understanding of how decisions made on a regular basis can profoundly impact health and, in turn, life expectancy. For instance, disability support workers may offer and provide foods considered to be treats or plan meals that may be enjoyed but have high caloric and limited nutritional value. Workers may lack an understanding of the importance of regular daily healthy lifestyle choices on physical and mental health. Unfortunately, poor health choices by disability support workers can infuence those same choices by service users: for example, smoking while sitting in the backyard with a service user exposes them to the effect of passive smoking and provides a model a service user may want to follow. Disability support workers, with strong support from practice leaders and managers, require suffcient health literacy to support healthy choices and lifestyles that lead to (a) physical ftness and a healthy weight; (b) good hygiene, including oral and bowel health and menstrual management in women; (c) optimal independent mobility; (d) avoidance of smoking and substance abuse; and (e) bone and joint health.

Armed with this health literacy, disability support workers can help service users with intellectual disabilities to make good choices across the day that will minimise the risk of chronic conditions, such as high blood pressure and being overweight, which can, in turn, lead to cardiovascular disease, diabetes, osteoporosis, arthritis, muscle weakness, and low energy. Maintaining good physical health also supports mental health by increasing the person's ability and opportunity to engage in social activities, build and maintain social networks, and participate in and contribute to communities. People with intellectual disabilities require explanations, guidance, and opportunities to make healthy food choices, maintain a healthy weight, and engage in regular exercise to promote good cardio function and build strength. Evidence of the benefts of this support comes from a review of research by Heller et al. (2011). They found that supporting people with even severe intellectual disability to engage in communitybased exercise programmes (such as ftness classes) and to make healthy food choices can improve their ftness and help them achieve a healthier weight. Psycho-social benefts were also found in this review to result from community-based exercise programmes, such as forming social connections and developing positive attitudes towards exercise. Important to achieving these benefts was help from disability support workers in accessing and engaging in these community programmes.

#### *Responding to Possible Signs of Ill Health*

Disability support workers have often supported individual service users over extended periods and know them well. This knowledge and seeing people in daily situations means that disability support workers are well placed to notice changes in a person that could signal health problems. Such changes can be seen in affect (being happy or sad), behaviours (becoming inactive or demonstrating challenging behaviours or behaviours of concern), or not wanting to engage with activities that would usually interest them or with people whose company they would typically seek out. These changes can indicate possible problems across physical, oral, or mental health. Direct support workers are not expected to know what the underlying problem is but rather to alert supervisors, managers, or family to the changes and to communicate them to healthcare providers.

#### *Accessing Healthcare*

People living in group homes are usually heavily reliant on their support staff to initiate, book, and support attendance at and follow up appointments with health professionals. The ability of disability support workers to advocate for and support access to healthcare will depend on their knowledge of the person's health needs, which is more likely if they have taken an interest in and supported them over a long period of time. Disability support workers with limited knowledge of the person's past and long-term social and medical history or who have worked with them for only a short period before being called upon to support their access to healthcare will need to collaborate with others. They will also need to have access to appropriate records, such as written observations made as part of health plans. Some general practitioners (GPs) will rely on structured strategies to ensure the person receives a comprehensive health check, such as through the use of the Comprehensive Health Assessment Program (CHAP), which has been rolled out across Australia (Lennox et al., 2013). The CHAP relies on collaboration between the person with intellectual disability, their GP, and direct support workers: structured observations of the service user and their medical history are recorded on a form by the direct support worker who shares it with the GP during a consultation. Responsibility for completing the support person's section of the CHAP can be shared with available family members, who often can provide detailed information about the person's medical history that may not be available to the disability support worker.

Disability support workers or managers must ensure that the person with disability sees appropriate health professionals for regular preventative care, such as physical and oral health checks, cardiovascular risk assessment, cancer screening, and vaccinations. Tools, such as the CHAP, which was designed to guide GPs through an annual health assessment, are particularly useful for those GPs who may be new to working with people with intellectual disabilities (van Dooren et al., 2016). Regular visits to healthcare practitioners can provide the care needed to achieve optimal outcomes for the person with disability while providing family and disability support workers with appropriate guidance to follow treatment recommendations at home.

Although disability staff or family may have responsibility for advocating for healthcare for a person with intellectual disability and supporting them to access it, adults with disability have the right to make decisions about their health and healthcare. Active involvement in decision-making will require assistance by family and/or disability support workers. This assistance may be in the form of providing and using educational material and communication systems or methods that refect the person's preferences and abilities. Having opportunities to practise being active in discussions and decisions is essential to developing confdence and competence. Every opportunity to practise and experience the outcomes of those decisions, at frst with small decisions and then building to more impactful decisions, should be supported and embraced. As with any new task, more coaching and guidance are required at frst, with a focus on the short- and long-term implications of decisions.

#### *Supporting Communication During Healthcare Consultations*

Supporting access to healthcare includes supporting direct communication between a health practitioner and the person with disability which, in turn, assists them to be active in decisions about their health and lives. Healthcare practitioners demonstrating a commitment to communicating directly with the person shows respect for the person with disability as an individual and provides reassurance in situations that can be unfamiliar and even distressing. Disability support workers often experience healthcare practitioners bypassing the person with intellectual disability by directing questions and conversation to them. Their reasons for this practice can include the practitioners need to obtain information quickly and effciently because of the time-limited nature of a typical consultation, being uncertain of the person's communication skills or unfamiliar with how they communicate, and general inexperience with people with communication differences. In these situations, an accompanying disability support worker can direct the practitioner's attention to the person to encourage the practitioner to do the same, model ways to engage and communicate with the person (e.g. through the use of signs, pictures, or simple but adult language) and to request permission from the person with disability to provide information on their behalf. For more guidance on this communication see Iacono and Johnson (2004) which provides strategies for GPs to better communicate with people with intellectual disabilities.

### Healthcare Systems

Knowing about healthcare systems and strategies to work with them can empower disability support workers to advocate for and facilitate access to good quality care across physical, oral, and mental health for people with intellectual disabilities.

#### *Designed as Mainstream Systems*

People with intellectual disabilities access the same mainstream healthcare services as used by all other members of the community: this is true for physical, dental, oral, and mental health services. Although services are provided by professionals skilled in specifc health areas, many will have had little training in delivering their services to people with intellectual disabilities. As a result, professionals, including GPs, dentists and oral health practitioners, and psychiatrists and psychologists, can overlook symptoms because they mistakenly attribute them to the person's disability or have diffculty adjusting to the person's communication needs.

Mainstream services, traditionally, have not been designed to accommodate the access needs of people with various disabilities, especially by applying universal design principles or knowing what and how to provide reasonable adjustments. Rather, the standard structures of the healthcare system, particularly in primary healthcare—GP consultations—often do not meet the needs of people with intellectual disabilities in terms of their cognitive and communication diffculties. Standard short consultations are usually insuffcient to address communication barriers and to enable people to take an active role in the consultation. Enhanced or extended consultations can help address this problem, as can access to tools, such as the CHAP mentioned earlier, which is designed to assist healthcare providers conduct regular and comprehensive health checks (Lennox et al., 2013). Comprehensive annual health assessments and regular reviews are required to monitor and detect health conditions that are known to be associated with certain disabilities (those intrinsic to the person). Long waits to be seen by a health practitioner can cause distress. Noisy or cramped waiting rooms can also be problematic. For those who also have physical disabilities, lack of access to appropriate equipment such as chair scales, Hi Lo (adjustable) beds, and hoists can be further barriers. Discomfort, confusion, anxiety, or fear may be expressed through unusual behaviours which may further undermine the health consultation.

#### *Working Across the Disability and Healthcare Systems*

There is mounting evidence that physical, dental, and mental health services can meet the needs of people with intellectual disability when reasonable adjustments are made. Many health practitioners and health services, however, still lack an understanding of how to adjust to the needs of this group or are reluctant to modify standard practices. The principle of making reasonable adjustments is integral to person-centred care; indeed, it is a legal requirement in many instances. As the benefts and rights of patients to person-centred care are recognised, there is evidence from Australian research that healthcare providers are increasingly making reasonable adjustments for people with disability (Wilson et al., 2022). This greater willingness may be the result of changes in training, which, although not focused on disability, encourage healthcare practitioners to consider the needs of individual patients (Wilson et al., 2022).

Disability support workers, especially those working in group homes, and their practice leaders and managers can act as the link between disability and health services, enabling healthcare providers to make reasonable adjustments to ensure care and services for people with intellectual disabilities. They also play a critical role in bridging supports across families and healthcare providers, including GPs, allied health practitioners, dentists and oral health practitioners, and psychiatrists and other mental health providers.

Reasonable adjustments rely on knowing the individual with disability. This includes their personality, preferences, communication abilities and strategies, health-related activities, past healthcare experiences, and current and past health issues. Sharing this information with healthcare providers and ensuring the role and experience of family are considered can promote the collaborative process required for quality healthcare. The appropriateness and success of reasonable adjustments will vary between individuals and across situations. The following examples require collaboration across disability service providers and healthcare providers:

• Arranging review appointments to check that interventions have resulted in the expected outcomes.

In addition to facilitating reasonable adjustments by healthcare providers, the following strategies are recommended for managers and practice leaders. They will assist disability support workers to fulfl their role in improving the health and access to healthcare for the people with intellectual disabilities they support:

The example of Amelia below illustrates some of the practice-related issues identifed in this chapter. It draws on authors' experiences as medical and allied health practitioners, as well as fndings from their research. The example is de-identifed and does not represent any one individual.

Forty-year-old Amelia lives in shared supported accommodation. She is usually active and socially engaged. She does not use speech but communicates enthusiastically using her body language, facial expressions, vocalisations, and photos on her iPad. Over the last few days, she has been unhappy and irritable and has been spending more time by herself in her room. Her support staff are concerned.

A member of staff took her to the GP, but her usual doctor (Dr G) was not available so she saw another doctor (Dr B) whom she had not met before. Dr B listened to the support staff express their concerns but did not engage directly with Amelia until he wanted to do an examination. He found Amelia had a slight fever, but as he approached to do a full physical examination, Amelia pushed him away. When Dr B tried again, Amelia got up and left the room. Dr B said he was unsure what was wrong, but prescribed antibiotics because of the fever and said to return if Amelia was not better in a week.

Amelia continued to deteriorate over the next few days.  The House Supervisor rang the GP surgery, explained the situation to the Practice Nurse, and asked for an appointment with Amelia's usual doctor. She saw Dr G two days later and was supported by a worker Amelia knew and trusted. Dr G spent a few minutes engaging with Amelia and looking at photos on her iPad. She said she was sorry Amelia wasn't feeling well and asked her if she had pain. Amelia's eyes flled with tears. Dr G asked if she would let her look at her tummy to try and work out what was wrong. Amelia's support worker and Dr G gently encouraged Amelia and supported her to get up on the examination couch. She was very tender in her abdomen and Dr G sent her for an ultrasound that showed gallstones. Amelia's favourite support worker went with her to the ultrasound investigation, and on the way home they stopped to get the photo frame Amelia wanted.

(*continued*)

#### **(continued)**

The lack of direct engagement and communication by Dr B led to a failure of accurate diagnosis and a distressing and potentially dangerous delay in treatment. The disability support worker and the doctor were not able to work together at the appointment to support Amelia get the healthcare she needed.

In contrast, in relation to the second appointment, the House Supervisor advocated for an appointment with Amelia's own doctor. Dr G engaged directly with Amelia, building rapport, trust, and confdence. Her disability support worker supported Amelia during the consultation to tolerate the examination. Dr G conducted a full examination, identifed an issue of concern, and referred Amelia for an abdominal ultrasound. The Practice Nurse informed the disability support worker about what would happen at the ultrasound appointment, and they discussed how to best support Amelia through the process. A staff member that Amelia knew and trusted accompanied her to the procedure, and she was able to tolerate the procedure with the worker's support and encouragement. An accurate diagnosis was made which, in turn, enabled effective treatment to be provided.

#### *Take Home Messages*

### References

**Open Access** This chapter is licensed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/ by/4.0/), which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence and indicate if changes were made.

The images or other third party material in this chapter are included in the chapter's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the chapter's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder.

## Supporting People with Complex and Challenging Behaviour

*Laura Hogan and Christine Bigby*

Different words have been used to describe the behaviour of people with disabilities that falls outside expected social norms and is harmful to themselves or others. These include behaviours of concern, behaviours of resistance, challenging behaviour, and abnormal behaviour. This chapter uses the term challenging behaviour, as it is most commonly found in the literature, while recognising that behaviours of concern is preferred in some Australian contexts.

Challenging behaviour is more common among people with intellectual disabilities than other groups of people with disability. As many as 18% of adults with intellectual disabilities display some form of challenging behaviour (Bowring et al., 2017). The extent of the challenging behaviour and the negative impact it has on quality of life highlight the

C. Bigby (\*)

L. Hogan

Centre for Disability Studies, University of Sydney, Sydney, NSW, Australia e-mail<EMAIL_ADDRESS>
Living with Disability Research Centre, La Trobe University, Melbourne, VIC, Australia e-mail<EMAIL_ADDRESS>
<sup>©</sup> The Author(s) 2024 161 C. Bigby, A. Hough (eds.), *Disability Practice*, https://doi.org/10.1007/978-981-99-6143-6\_9

importance of designing services and developing practice skills to provide quality support to this group. This chapter defnes and considers different types of challenging behaviour, the impact of the behaviour itself and how others respond to it, and its underlying causes. The chapter uses case examples to illustrate good practice. The examples are based on our practice experience and do not represent any one individual. The last part of the chapter reviews evidence-based strategies to support people with challenging behaviour to have a good quality of life.

## The Impact of Challenging Behaviour on Quality of Life

Challenging behaviour is often seen as a person's way of communicating about their environment or situation. It may also be a symptom of an underlying health problem or genetic condition. Labelling behaviour as challenging can have lasting consequences for the way people are perceived by staff or services and should not be done lightly. Defnitions of challenging behaviour convey a sense of its severity and seriousness:

Culturally abnormal behaviour(s) of such an intensity, frequency or duration that the physical safety of the person or others is likely to be placed in serious jeopardy, or behaviour which is likely to seriously limit use of, or result in the person being denied access to, ordinary community facilities. (Emerson, 2001)

There are three categories of behaviour under this broad umbrella: stereotyped, aggressive destructive, and self-injurious.

• **Self-injurious behaviours** are intentional and often repetitive activities that cause injury or harm. They include self-biting, skin picking and scratching, consuming dangerous or non-food items, self-induced vomiting, or head-banging. This behaviour causes short-term pain and injury or permanent damage which can include physical disfgurement, vision impairment, or brain damage.

Challenging behaviour negatively impacts a person's quality of life, both as direct harm from the behaviour itself and indirectly through the response of service systems to the person and their behaviour. Harm resulting from the response of service systems means that much of the negative impact can be reduced by providing quality services and specialist interventions.

#### *Denial of Human Rights*

A frequent response by services to people with challenging behaviour is restraint or seclusion to restrict a person's autonomy or freedom of movement. Known in some service systems as restrictive practices, such actions may be sanctioned and regulated by bodies like the Australian NDIS Quality and Safeguards Commission. This Commission, for example, defnes and regulates fve types of restrictive practices. These are as follows: chemical restraint, mechanical restraint, physical restraint, environmental restraint, and seclusion (NDIS Quality and Safeguards Commission, 2020). The use of restrictive practices often compounds the negative impact of challenging behaviour and results in further psychological distress, loss of dignity, and autonomy and social inclusion. For example, chemical restraint that involves the use of medication usually prescribed for mental health conditions, to calm or sedate a person, can lead to psychological, neurological, or physical harm. However, it may also go unnoticed and unregulated, as this example illustrates:

Jing fnds noisy and unpredictable environments diffcult. Every Sunday, the staff support the other people who live in her group home to host a dinner for their friends and family. Sometimes, the dinner overwhelms Jing and she calls people names, pushes them away, and slams doors as she goes to her room. Although Jing was not diagnosed with anxiety, when this behaviour started many years ago, her doctor prescribed anti-anxiety medication to be given to her by staff when the behaviour occurred.

Jing has recently had a new doctor who reviewed her medication. He is concerned that the anti-anxiety medication is causing a range of health concerns, including drowsiness and frequent upset stomachs. Jing has regularly missed work on Mondays due to being tired and unwell. Jing's staff were unaware of the side effects of the medication given to her most Sundays or that the practice was a chemical restraint.

Despite the regulation of restrictive practice, there is little data about its use. Dated fgures from the UK suggest that up to 50% of people with intellectual disabilities in group homes are subjected to restraint or seclusion (Deveau & McGill, 2009). Longitudinal data from the Australian state of Victoria suggests that restrictive practices are often used long term and show that 74% of a sample of 1180 people with intellectual disabilities were subjected to restrictive practices for three or more years (Leif et al., 2023). Available national data about the number of times restrictive practices are used does not help to understand how many people are affected. Nevertheless, the fgure of 688,163 incidents of unauthorised use of restrictive practices in the frst six months of 2022 in Australia does indicate widespread use and raises questions about the effectiveness of the regulatory system (NDIS Quality and Safeguards Commission, 2022).

Regardless of compliance with regulations, using restrictive practices interferes with a person's human rights. Decisions about the use of such practices should refect complex judgements that balance rights against each other, such as the right to freedom of movement against the right to be safe and free from harm (see Chap. 11).

Staff or service system responses to people with challenging behaviour, although not categorised as restrictive practices, may also limit a person's exercise of choice or restrict their social inclusion. In this example, people in Kenny's life made decisions that meant the loss of employment and relationships:

Kenny is a young man with intellectual disability as the result of the genetic condition, Fragile X Syndrome. He does not sleep well at night. When he is awake he repetitively bites the skin on his arms. This behaviour has happened for many years, and interventions have not been successful. Kenny has many scars on his arms which have started to limit how much he can bend and straighten his elbows. He used to work at a supermarket stocking the shelves. He enjoyed his job, was a well-liked member of the staff and lots of people used to pop by to say hi. Last year, Kenny's manager suggested he fnd a less physically demanding job. Kenny has not found another job and has lost contact with his previous colleagues.

#### *Stereotyping*

People labelled as having challenging behaviour are often stereotyped. This impacts their opportunities to participate in daily activities and in the way staff regard them. Staff may hear about a person's behaviour before their other characteristics, refer to a person as 'having behaviours' or temper tantrums, use labels such as 'grabber', or collectively refer to people as living in 'a challenging behaviour house'. Labels such as these stereotype the person as dangerous, frightening, childlike, or annoying and infuence how support is provided. For example, if a staff member hears a person is violent with sharp objects, they might decide not to support them to cook, without being aware of strategies in place to support safe cooking experiences.

### *Disruption to Staff Relationships*

The presence of challenging behaviour can disrupt the continuity of relationships between staff and the people they support. Supporting a person who frequently hurts themselves is emotionally distressing for staff. Staff who support people with aggressive behaviours may fear for their safety or experience physical harm. The emotional demands of working with people with challenging behaviours can lead to increased absences from work, lower job satisfaction, sudden resignations, and decreased quality of support. This example considers the situation of a female worker supporting adults with physically and verbally aggressive behaviour:

Toni has worked at the same group home for several years. Two residents have regular episodes of aggressive challenging behaviour, involving throwing objects and standing over and yelling at staff. Toni has been hit by objects and bruised. All incidents are reported, and some emotional support is provided, but Toni feels that little is done to improve the situation. Toni is pregnant and is worried about her baby's well-being. She has taken a week off and is considering resigning from her role.

## Reasons for Challenging Behaviour

Understanding the reasons behind a person's challenging behaviour helps select the best support strategies. The features associated with higher rates of challenging behaviour give some insights into potential causes. These include more severe levels of intellectual disability, specifc genetic syndromes such as Fragile X, neurological diagnoses such as Autism or epilepsy, poor physical health, sensory impairments, boredom, and long periods of disengagement (Bowring et al., 2017). Challenging behaviour is unlikely to stem from a single factor but from an interplay of factors. Some of these are fxed and intrinsic to individuals (such as specifc syndromes) while others are transient and associated with the quality of the support a person receives (such as the person's level of disengagement). This means some features can potentially be changed whilst others cannot (see, for example, Emerson, 2001) (Table 9.1).

Behavioural phenotypes are patterns of behaviour associated with other characteristics and specifc genetic syndromes. For example, people with Fragile X syndrome are likely to have stereotypic and self-injurious behaviours (Langthorne & McGill, 2012), and people with Prader-Willi Syndrome to ask repetitive questions and have outbursts of temper (Oliver et al., 2009). The biological predisposition for such behaviours cannot be changed, but knowing if a person has a diagnosed syndrome is important for deciding which support strategies will likely be most effective in supporting a good quality of life.

Untreated physical and mental health conditions, which are common among people with intellectual disabilities due to diffculties of diagnosis or access to health care, may be the underlying cause of challenging behaviour. These may include pain, hormonal changes, refux, medication side effects, constipation, sleep disturbances, dementia, or deterioration in hearing or eyesight. A sudden change in behaviour such as that described in this example indicates that the cause may be a health condition or pain:

Daniel has a profound intellectual disability and is non-verbal. He started slapping his cheek after meals. This was new behaviour and staff thoroughly

**Table 9.1** Intrinsic and extrinsic reasons for challenging behaviour

checked his mouth and gums during his oral health routine and did not notice any injuries. They booked a review with his dentist who found a piece of tooth missing from the back of Daniel's molars, exposing the nerve. Once the tooth was repaired, the behaviour ceased.

Environmental demands, such as high levels of noise or other forms of sensory stimulation, are diffcult for some people to tolerate and can lead to learned stereotypic behaviours as a coping mechanism. An example of this is repeating the same sound over and over while walking through a shopping centre as a way of reducing the sensory overload of a busy and loud environment. Although this type of behaviour may not always be harmful, it may limit the activities a person can do or who they can be with.

Disengagement and boredom are also reasons for challenging behaviours. People with intellectual disabilities who live in supported accommodation with 24 hour staff support are at much higher risk of challenging behaviour as they may not get the type of staff support they need to be engaged in meaningful activities and social interactions. Services may not equip staff with the opportunities and support they need to learn the skills to create regular routines, communicate choices, offer opportunities, and provide the individualised support that some people require to be engaged. The absence of skilled support has a greater negative impact on people with more severe intellectual disabilities who fnd it hard to engage by themselves and whose communication diffculties make it diffcult to seek out support in the way those with milder intellectual disabilities may. Indeed, in some instances, a person may learn challenging behaviour through the repeated and similar responses of others to their attempts to be engaged. For example:

Elly stopped attending her day program during the COVID-19 pandemic and has not returned due to staffng shortages. She is at home all day with limited planned activities and the staff are busy with administrative work and attending to house chores. They notice that Elly has started picking apart the lounge chair's stitching. When they see this happen, they sit with her, and talk about what is happening around the house. Over time, more and more furniture is damaged. The staff continue checking in with Elly, trying to distract her when they see her damaging the furniture.

In this example, staff reinforced Elly's behaviours by delivering positive outcomes in the form of social interaction.

Some causes of challenging behaviour are related to emotional or psychological development. People with intellectual disabilities are more likely to have experienced disrupted relationships with primary carers, maltreatment, or traumatic incidents in childhood than their non-disabled peers (Clegg & Lansdall-Welfare, 2022). If left unresolved such experiences may manifest in adulthood as challenging behaviours. For example, a person with unresolved emotional issues from childhood may become excessively attached to one staff member leading to aggressive behaviour when the staff member's attention must be shared with others or when they are leaving at the end of their shift.

## Supporting People with Challenging Behaviour

For some people challenging behaviour is caused or exacerbated by the poor quality of services or other aspects of their environment. Ensuring receipt of good quality services and support is therefore a fundamental part of any intervention. This may be suffcient to reduce or prevent challenging behaviour.

Health-related causes can be minimised through timely attention to behaviour changes and preventative health care, such as annual health assessments and regular reviews by a person's general practitioner and other healthcare team members. Maintaining records of health assessments, recommendations, and follow-up are important points of reference to track changes that occur over time: for example, tracking menstrual cycles to determine the onset of menopause or regular cognitive screening as a person ages to identify slow decline that might indicate dementia.

Reasons for challenging behaviour related to sensory overload can be minimised by supporting choice about the types of places a person visits or the timing (going to shopping strips rather than large centres, or visiting early or late in the day when there may be less noise or people) or adjusting a person's home environment to suit their tolerance levels for noise or using equipment such as ear plugs or headphones to minimise the sensory load they experience.

Staff's use of Active Support as a way of working is one very clear strategy likely to diminish disengagement and learned behaviour such as Elly displayed. It is likely however that a combination of preventative actions by a person's everyday services and specialist intervention may be necessary to support a person with challenging behaviour to have a good quality of life.

### Behavioural Strategies

Most specialist interventions for people with challenging behaviour are behavioural and apply principles from behavioural psychology. They use comprehensive functional assessment to understand the meaning of behaviour and develop multi-element support plans. Techniques such as Applied Behavioural Analysis (ABA) aim to understand and manipulate the antecedents of behaviour (what happened immediately before the behaviour), the behaviour itself, and the consequences of behaviour (what happened directly after).

Since the 1990s, the aims of interventions widened, to improving a person's quality of life rather than simply reducing challenging behaviour. This recognised that for some people the multiple or underlying genetic causes of people's challenging behaviour meant it was unlikely to reduce and that supporting social participation could not only improve quality of life but also reduce challenging behaviour (Bigby, 2012). Positive Behaviour Support (PBS) has become the dominant approach in both Australia and the UK. PBS is a whole of system, multi-component approach, that aims to understand the reasons for challenging behaviour and create change both at the individual level through expanding a person's repertoire of behaviour and in a person's social, environmental, or support system through redesign. PBS has twelve components which, as Table 9.2 shows, fall into three distinct types: rights and values, theory and evidence base, and process and strategy.

Creating a high-quality service environment, as well as individual assessment and support plans, is central to the processes and strategies of PBS. The next section turns to a consideration of assessment and support plans.

#### *Assessing Behaviour and Developing a Behaviour Support Plan*

Developing a behaviour support plan uses processes similar to those described in Chap. 10 for other types of plans. However, in this case the lead is taken by someone with expert knowledge about behaviour support. In some countries, this may be a person with recognised qualifcations in behaviour support or a psychologist with specialist training. In Australia, the lead person is likely to be known as a behaviour support practitioner, who might have a professional background in psychology, allied health,

**Table 9.2** Components of a PBS framework (Gore et al., 2022, p. 13)

education, or nursing or have no formal qualifcations but is recognised as having relevant skills and experience.

The assessment and planning process should be collaborative, involving the person, their family or signifcant others, staff from their various service providers, and professionals involved in the person's life. A functional behaviour assessment is undertaken to understand the behaviour, its underlying cause, where it occurs, with whom, and what happens before (antecedents) and after it (consequences). This may draw on existing reports or new medical, dental, or allied health assessments to rule out medical or psychiatric causes for the behaviour. Background information about the person should be collected by reviewing reports and interviews with the person and key people in their life. It should include information about the person's strengths, support needs, their social relationships, and the services they access. Direct observation of the person's behaviour should also be conducted in the various settings where challenging behaviour occurs. Information is analysed to formulate a theory about the causes of behaviour, which then forms the basis for the development of strategies to prevent or reduce the behaviour.

During the assessment or intervention planning stage, reports may be sought from professionals with knowledge about specifc types of intervention strategies. For example, speech pathologists can provide advice about effective and appropriate ways to improve communication, and occupational therapists can suggest how to adapt the physical or sensory environment or propose the use of adaptive equipment.

A behaviour support plan should include three types of strategies: preventative, proactive, and reactive.

Strategies must be practical and understandable to the staff responsible for implementing them, and plans must identify the people responsible for oversight and review. Where necessary plans must include details about the training and ongoing support available for staff implementing them and include ongoing data collection to inform a continuous cycle of review.

## Psychodynamic Approaches

Some causes of challenging behaviour are related to separation or trauma in early childhood. If this is the case, alternatives to behavioural theories to inform specialist interventions are relevant. Psychodynamic interventions recognise the "untapped potential for development and growth in the emotional lives of people with intellectual disabilities that has the possibility to redress non-optimal life-histories and reduce distressed and distressing behaviour" (Clegg & Lansdall-Welfare, 2022, p. 6). These interventions aim to support staff connection with, and the co-regulation of, the emotional worlds of distressed people through careful "use of words, tone of voice, facial expressions, or body language that steadies the person who struggles to harness their chaotic emotions" (Clegg & Lansdall-Welfare, 2022, p. 6). For example, services in the Netherlands use a practice known as Triple C (Tournier et al., 2020). The Cs represent Client (the person with an intellectual disability), Coach (the support worker), and Competence (the activity which the client and coach perform together). This practice emphasises relationships, unconditional support to improve a person's attachments and relationships with support staff, to provide a secure base for joint activities. Several other practice tools to support practice-based or emotional co-regulation are described in detail by Clegg and Lansdall-Welfare (2022). There are, however, few professionals with this type of practice expertise in Australia with the consequence that behavioural interventions dominate practice.

## Examples of Supporting People with Challenging Behaviour

The two examples below illustrate the service context and evidence-based practices, relationships, training, supervision, support, and teamwork, that may be involved in implementing a behaviour support plan and supporting a person with challenging behaviours to have a good life.

#### *Joe*

Joe is a young man with Prader-Willi Syndrome and moderate intellectual disability who lives in a group home with three other young men with intellectual disabilities. His housemates have similar support needs to Joe but none have challenging behaviour. Joe attends a community access programme. As part of his syndrome, Joe asks many repetitive questions and fnds it diffcult when things do not go how he would like. If the staff answer "no" to one of his questions, he argues with them. Occasionally, this escalates, and Joe slams doors and throws items within his reach. As part of his diagnosis of Prader-Willi syndrome, Joe has a range of health needs that require ongoing monitoring and review.

#### *Services and Evidence-Based Practice*

Joe uses accommodation and community access services and has a behaviour support practitioner. He also uses mainstream services, for example, a general practitioner and a dentist. For people like Joe living in supported accommodation it is not always clear who leads the coordination of their services and collaboration among staff. It may be a support coordinator or, in the case of Joe, the manager of his accommodation service.

The design of the group home refects research that homes should be small with no more than six people and dispersed in the community (Bould et al., 2019). Attention has been given to knowledge about the compatibility of people living together, in that they should have similar support needs and people with challenging behaviour should not be grouped together. The organisations that manage Joe's group home and community access programme mandate Active Support (see Chap. 7) as the expected staff practice and it is embedded into organisational policies and procedures. Staff's use of Active Support to support Joe means he engages in meaningful activities and social interaction at home and in the community and exercises choice and control throughout the day. He is not disengaged for long periods and staff provide the right amount of the right type of assistance to enable him to successfully participate in household and leisure activities. Joe interacts with staff and people he encounters when he is out in the community (see Chap. 4). When people have choice and control over their lives and are engaged they are less likely to use challenging behaviours to express their needs (Ockenden et al., 2014). Knowing the person and understanding communication will ensure Joe's preferences are understood by staff and he understands the activities offered to him, which are important for good Active Support practice.

The organisation that manages Joe's group home keeps detailed records about his health needs, which are compiled into a one-page summary accessible to all staff. One staff member is his key worker: they are responsible for supporting him to attend medical appointments, interact with health professionals, understand their advice, share health information with other staff, and ensure all actions from appointments are followed up.

#### *Relationships*

As part of Active Support practices staff interact with Joe in a warm and friendly manner, treating him with respect and dignity. All the staff play an important role in his life, and he has a strong relationship with his key worker. These relationships, and the nomination of a key worker, accord with evidence that challenging behaviour is reduced when a central staff member is involved and there are positive interactions with all staff (Olivier-Pijpers et al., 2020).

It is not uncommon for people like Joe to develop close bonds with support workers. Aware that the turnover of staff can be distressing when staff leave, Joe's services aim to extend his social connections beyond staff. The community access programme he participates in supports him to attend several classes at a local recreation centre. One of the aims of the community access programme is that Joe will become known and recognised by other users of the centre and may begin to form friendships. Staff at the group home are aware of this strategy and support Joe to interact when he sees people from the centre in other contexts. Staff from his group home also support Joe once a week to use Zoom on his iPad to catch up with his brother who lives interstate.

#### *Staff Training and Supervision*

Joe's service providers are responsible for ensuring staff are competent and have the knowledge and skills to provide high-quality and consistent support to Joe. They have accessible and practical policies and procedures, an induction programme, training, clear reporting lines, supervision, and access to debriefng.

Refecting evidence about effective Active Support training they ensure that staff have a practical hands-on component and theory components delivered in a classroom or online. As part of their induction all staff are given basic knowledge about Prader-Willi syndrome and taught about the procedures in place to support Joe to manage his insatiable appetite and constant need for food which are part of this syndrome.

Staff in the group home and community access programme are supervised by a Frontline Practice leader. Their role is to ensure staff remain focused on Joe's quality of life, get regular feedback on their practice and coaching to improve it. Frontline Practice leaders model good practice, support staff to work together as a team, and ensure they maximise their time on every shift to support Joe. This accords with evidence that strong Frontline Practice Leadership is associated with good Active Support and reduced challenging behaviours (Olivier-Pijpers et al., 2020).

The very specifc strategies in the behaviour support plan developed with Joe and others will be shared with all the staff working with Joe. The behaviour support practitioner will take responsibility for briefng and training staff in its implementation.

#### *Teamwork*

Teamwork is critical to the quality of all Joe's support and successfully implementing the behaviour support plan. Joe is included in the team and staff work together with him collaboratively to ensure consistent support. Teamwork among staff in each service is facilitated by their Frontline Practice leaders, and a monthly meeting or conference call between leaders supports consistency and coordination of staff in the different services. This accords with evidence that challenging behaviour is reduced when there is cohesion between the staff team, collaborative input from specialists, such as allied health and medical professionals, supportive colleagues, and the space to make mistakes and learn from them (Olivier-Pijpers et al., 2020).

#### *Sylvie*

Sylvie is a young woman with mild intellectual disability, obsessivecompulsive disorder (OCD), epilepsy, and dental disease. She has moved to be closer to her sister and shares a unit with one other woman. She receives daily drop-in support to assist with cleaning, meal preparation, and to attend appointments. She has no regular activities but is interested in fnding work with animals, making friends, spending time with her sister, and attending live music gigs.

Her OCD means she showers many times a day. In the past, this has meant she has missed appointments and scheduled activities. Excessive showering results in skin rashes and fungal infections. If staff intervene, she can be verbally and physically aggressive.

#### *Service Delivery*

Sylvie uses one service for drop-in support and support coordination. The support coordinator takes the lead and is negotiating a range of additional services, including a general practitioner with experience supporting adults with intellectual disabilities and mental health, a dentist, and a mental health professional to support her to manage the OCD and associated behaviours. Such services will be important to the success of her living situation as evidence shows that unmet medical and behaviour needs are common reasons that community living arrangements fail (Kim & Dymond, 2020). Accessing services to support Sylvie to fnd employment and social activities are equally important, as engagement will avoid boredom, help improve Sylvie's quality of life, and reduce her behaviours.

### *Relationships*

The support coordinator aims to maintain Sylvie's relationship with her sister and include her as part of Sylvie's support team. Further the support coordinator will support Sylvie to fnd a service to provide opportunities for her to meet new people with similar interests to her own. The coordinator is also aware that Sylvie's relationship with her fatmate is very important. Advice from the mental health professional who will manage Sylvie's OCD about strategies for reducing excessive use of the shower will be important to avoid putting strain on this relationship.

#### *Training and Supervision*

The coordinator has ensured that the drop-in support service has trained staff about Sylvie's support needs and OCD. They have been trained in Active Support and take care not to over support Sylvie with household tasks that she can do alone with some prompting. She has also made the service aware that staff may need supervision and incident debriefng should Sylvie be verbally or physically aggressive. For staff working alone in this type of one-to-one situation, immediate incident debriefng is important to ensure accurate reporting, the well-being of all involved, and any immediate strategies to reduce the risk of another incident. Regular supervision allows staff who work with Sylvie to discuss support for her and opportunities for improvement.

Sylvie has a dated behaviour plan, written when she lived at home with her parents. Her mental health professional will update this plan and will also provide training for Sylvie's support team in implementing new or revised strategies.

#### *Teamwork*

As more services are established for Sylvie, training and sharing of information among new staff will become more important. New people will have to quickly get to know Sylvie and understand information about her support needs. The service coordinator will support the fow of information between these services which will help ensure that her team works collaboratively. Sylvie and her sister are critical members of this team, and an essential part of this teamwork is empowering Sylvie to be actively involved in decision-making.

## Reflecting on the Use of Positive Behavioural Support

There are gaps in evidence about the effectiveness of PBS in the context of supported accommodation services (Gore et al., 2022). Some researchers suggest this is because what is regarded as best practice is seldom fully implemented in services. For example, one UK commentator suggested:

It is relatively rare to fnd a service that has all of the recommended elements in place in the right amounts and combinations ….

Most people with challenging behaviour still do not receive effective interventions even though adopting a positive behavioural support (PBS) model has been shown to provide them. Instead there continues to be an overreliance on inappropriate medication and restraint, the unethical use of control and punishment and exclusion of people from their own communities. (Jones, 2013, p. 5)

Data from the regulatory body in Australia points to the poor quality of behavioural support plans (NDIS Quality and Safeguards Commission, 2022) and research shows that plans are unlikely to be fully implemented (McGowan et al., 2017). Research also suggests that Australian policies misinterpret PBS as a set of strategies that narrowly concentrate on producing behaviour support plans and reduction of restrictive practices rather than a systematic approach to improving quality of life (Hayward et al., 2021).

A number of small studies do however suggest the effectiveness of PBS when external specialist behavioural services support accommodation staff teams (Lewis et al., 2021). Notably, in these studies, it is specialist teams that conduct assessments, develop individualised plans, and support accommodation staff with implementation. This suggests that specialist teams may be more effective than the arrangements in Australia where many such teams were disbanded as a result of individualised funding and replaced by sole behaviour support practitioners.

The largest and most rigorous study of PBS in supported accommodation took a 'setting wide' approach (McGill et al., 2018). Its principal aim was improving the quality of care and the support environment (see Table 9.2 Component 9) for people with challenging behaviours, while maintaining support from external behavioural specialists. Expected standards of support were defned, coaching was provided to service managers and staff to enhance their performance, and progress was regularly monitored. From this study, the concept of Capable Environments was developed (McGill et al., 2020). The study sets out the features that should be in place both in terms of the everyday support in a service and in the managing of the organisation to support a good quality of life for people with challenging behaviour. These are summarised in Table 9.3 alongside the evidence-informed practices discussed in this chapter.

This table may be a useful checklist for staff and organisations managing group home services or drop-in support for adults with intellectual disabilities and challenging behaviours.

The major challenge for organisations is to create and sustain the conditions necessary for supporting people with challenging behaviours set out in the Capable Environments framework. This will primarily be through the values of senior and mid-level managers, and organisational structures and processes they put in place. Culture is a key infuencing factor on service quality and practice, and establishing a cohesive, respectful, enabling, and motivating organisational culture is a major task for leaders across an organisation. The nature and infuence of culture has not been considered in this chapter as it is so signifcant that it warrants a dedicated chapter (see Chap. 13).

**Table 9.3** Evidence-informed practice and services that deliver Capable Environments

#### *Take Home Messages*

### References

lenging behaviours in support services for residents with intellectual disabilities. *Heliyon, 6*(8), e04751–e04751. https://doi.org/10.1016/j.heliyon.2020. e04751

Tournier, T., Heniks, A. H. C., Jahoda, A., Hastings, R. P., & Embregts, P. J. C. M. (2020). Developing a logic model for the triple-C intervention: A practice-derived intervention to support people with intellectual disability and challenging behavior. *Journal of Policy and Practice in Intellectual Disabilities, 17*(4), 297–307. https://doi.org/10.1111/jppi.12333

**Open Access** This chapter is licensed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/ by/4.0/), which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence and indicate if changes were made.

The images or other third party material in this chapter are included in the chapter's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the chapter's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder.

## Support Planning with People with Disabilities

## *Tal Araten-Bergman*

Disability policy and practice focus on the human rights of people with disabilities, their quality of life and their exercise of choice and control. It places people with disabilities at the centre of decision-making about their lives, recognising their strengths, preferences and personal goals. Many countries have adopted person-centred approaches to service planning and delivery which individualise and organise service systems to maximise choice and control of the services and support received. Increasingly individualised funding mechanisms such as direct payments and personal budgets are used to allocate government funding directly to individuals so that they can purchase services based on their own desired outcomes and support needs.

Individualised funding and person-centred approaches require a signifcant change in the roles of all professionals involved in disability services and the way services are delivered and evaluated. Disability practice must shift away from professional assessments and judgements about the services a person needs to live a good life. Rather professionals and service

T. Araten-Bergman (\*)

Living with Disability Research Centre, La Trobe University, Melbourne, VIC, Australia e-mail<EMAIL_ADDRESS>
C. Bigby, A. Hough (eds.), *Disability Practice*, https://doi.org/10.1007/978-981-99-6143-6\_10

<sup>©</sup> The Author(s) 2024 183

providers must strive for greater collaboration with the person with disability and others who know them well, to understand their support needs and preferences. Collaborative meetings of all the experts about a person's life including the person themselves and the people who know them in different ways and from different perspectives should lead to responses tailored to meet the unique needs and preferences of a person across different life domains.

The processes of *support planning* are fundamental to person-centred services and individualised funding. Through a collaborative process, support planning aims to identify what is most important to and for a person to live a good life, explore resources in their environment, and make decisions about the nature and quantity of services and supports needed to assist in having a good quality of life.

Support planning has become a primary task of the disability workforce. However, service providers, policymakers and people with disabilities themselves are often confused about the purpose and processes of support planning and what constitutes best practice. For example, research shows that planning is often mistaken for a short meeting with professional experts which aims to produce a static plan or planning is conceived to be a one-off meeting between the person, their signifcant others and a service provider. Such misunderstandings can mean key stakeholders underestimate the time, effort and skills necessary to effectively support people with disability to live the life they want (O'Brien & Lovett, 1993; Robertson et al., 2007; Taylor & Taylor, 2013).

This chapter aims to review the purposes of support planning, the different types of plans, the common principles and processes of good planning and to consider some of the complexities of putting these principles into practice to ensure plans are implemented and inform action. In the rest of the chapter, the term "professional" primarily refers to the service provider responsible for coordinating the planning processes and developing the support plan.

## Support Needs and Support Planning

Contemporary disability practice has two basic assumptions. First is that people with disabilities have the same human needs as the general population (such as needs for information, health, housing, meaningful personal relationships, active engagement, choice and control). Second is that the quality of life and daily functioning of people with (and without) disabilities is signifcantly infuenced by the availability of supports to meet their needs (Thompson et al., 2009; Thompson et al., 2002; van Loon et al., 2010).

*Supports* are defned as resources (such as skills, money, technologies and time) and services that aim to promote personal growth, interests, capabilities and opportunities for a person to function and live a good life (Thompson et al., 2002; Thompson et al., 2009). Supports can be provided by natural supporters (such as family, friends and community members), mainstream services (such as health, mental health education and justice), specialised services designed specifcally for an individual (such as drop-in support) or specialised services designed for a specifc group of service users with disability such as a social club, day centre or group home.

The need for supports is not unique to people with disabilities: everyone in their day-to-day life relies on a variety of supports and services (such as those provided by the education system, healthcare, housing and employment). However, for many people with disabilities, supports available from mainstream services are insuffcient to realise the opportunities that life presents and they may require additional or different types of support to participate in society and to have a good quality of life. People with intellectual disabilities may need additional help to meet their needs; this help is often only available through specialist disability services, such as support to access and use mainstream services, or to make decisions or participate in their community.

Current disability practice aims to understand peoples' *support needs*. This means understanding how a person wants to live their life, what they want to do, what is and who are important to them, and what a person needs to stay safe and healthy. The depth and breadth of understanding sought about a person's support needs varies considerably depending on where support needs planning occurs. For example, it may only be superfcial when the purpose of planning is the allocation of funding but may be very detailed and specifc when the purpose of planning is to guide the direct provision of support to meet a person's aspirations to build social connections. It is widely acknowledged that every person's support needs are unique and refect the gap between their characteristics and abilities, the available opportunities in their environment and how they want to live their life. Understanding a person's support needs, planning with them and providing the right type and amount of supports to them may bridge this gap and result in positive outcomes such as improved functioning, greater independence, better quality of life and social inclusion (Thompson et al., 2009).

## Purpose and Key Principles of Support Planning

In the broadest sense, support planning is a systematic process where the person with disability, signifcant people in their life and professionals work collaboratively to identify what is most important to and for the person (their goals and support needs) and then develop strategies to utilise resources to enable the person to live the life they want. This open and collaborative exploratory process should result in a support plan—a document that outlines a person's goals and describes how these will be achieved through the involvement of people, services and resources (Sanderson, 2000).

An ideal plan explains clearly a person's desired outcomes and details specifcally what will be done, when and by whom, thus setting a clear work plan for all people and services involved. Of course, many plans look very different from this ideal type. The level of detail they include about goals, needs, strategies and resources depends on where in the service system support planning occurs. Indeed, in service systems with individualised funding a person's initial support plan may simply deal with the allocation of funding. For example, in Australia's National Disability Insurance Scheme (NDIS), planners in the National Disability Insurance Agency (NDIA) develop high-level plans with scant details other than the volume of allocated funding. Such plans then cascade down and are progressively developed with greater levels of specifcity by support coordinators, the person themselves or service providers.

Support planning is carried out by different organisations, such as federal government agencies that allocate funds (such as the NDIA), by support coordinators or case managers who aim to fnd and coordinate services to meet the support needs identifed by funding agencies, or by staff in services contracted to deliver specifc supports to a person.

Thus, plans take many shapes and forms depending on the context, the type of organisation where the planning is done and the desired outcome. Some plans may focus on a specifc life domain or life course transition, and others on all domains and the whole of a person's life. For example, people with disability and their families might plan to address a particular life domain such as healthcare, education or leisure, or plan how to best support the person through certain life stages or transitions, such as starting or leaving school, or they may focus more comprehensively on a person's aspirations for their future lifestyle.

Regardless of the particular type of planning and its specifc purpose and context, all planning processes should involve the person and others who are experts about aspects of their life. The key principles of planning processes are that it is: person centred, collaborative, individualised, focused on personal outcomes and dynamic,

Collaboration and shared power between the person themselves, professionals and service providers are key to good planning. While in the past people with disabilities were passive recipients of care and professionals were the experts, current practice requires that the person themselves and, where appropriate, those who care about them drive decision-making about support. Shifting power away from professionals does not detract from their roles as subject matter or system experts and reliance on their knowledge and expertise in working with people with disabilities, families and services and building partnerships to articulate needs and initiate actions. Support planning brings together people with disabilities as experts on their own life and professionals as "experts of the process". While all parties play an active role in planning processes, it is the responsibility of the professionals to build and sustain a collaborative approach and create a warm and safe environment to sustain effective processes.

Support planning processes are based on the notion that knowledge and understanding about support needs and effective solutions are created through an open and free dialogue. At the start of any planning process, neither the person nor the professional possesses all the knowledge required about needs and supports. Rather it is through purposeful engagement between the person, signifcant people in their lives and professionals that such knowledge is shared or created. This knowledge can then be used to reach informed decisions about desired goals and preferred supports necessary to formulate a plan. It is the professionals' role to create a safe space and to allow suffcient time for a free exchange of ideas and exploration of different options and solutions.

Many years of research in human service practice generally, and disability in particular, shows that a trusting relationship between professionals and service users results in more realistic and sustainable plans which then yield better outcomes for the person and more effective resource allocation for the service system (Collings et al., 2018; O'Brien & O'Brien, 2002).

## Support Planning Processes

This section sets out the generic processes of planning, recognising that the exact nature of each step and the plan itself is heavily infuenced by its purpose and context. If plans are to be successfully implemented, the planning process should explore as deeply as possible the person's situation, goals, support needs and strategies for meeting these. Good support planning addresses issues of capacity, functioning and health and safety. This requires a tailored process that includes:

Support planning is a complex and iterative process, where the demarcation between each part is not always clear and which may involve moving backwards and forwards between different parts (Bigby & Frawley, 2010). Nevertheless, separating and describing each part of the process is useful for identifying the tasks and issues that each involves.

#### 1. Getting to Know the Person or Pre-planning

The frst part of the process is sometimes referred to as "pre-planning" and lays the foundation for the rest of the process. It is important for the professional to gain insight into how to communicate effectively with the person, who are the important people in the person's life and the support the person needs to be involved and to participate in the planning process. This requires the professional to spend time gathering and analysing information from a variety of sources about how the person communicates (e.g. verbally, using communication aids, how to tell if they are happy or not, comfortable or not with someone or something), how they learn and process information, how they make decisions and who supports them in making choices or expressing preferences. This information enables the professional to tailor the planning processes to be as benefcial as possible to the person (Collings et al., 2016; Dowse et al., 2016).

Getting to know the person involves more than reading or recording information: it is about spending time together building a trusting relationship and making sure that everyone involved understands their role, the purpose of the planning and how the support plan will be used. Too often pre-planning is undervalued and neglected or constrained by inadequate allocation of time and other resources.

#### 2. Assessing Support Needs

This part of the process provides time and space to explore the person's goals and support needs in the context of their life. It seeks to garner evidence to inform decisions about desired outcomes and what support should be included in the plan to achieve these. It is important to understand that assessment is not a diagnostic process or an evaluation of whether the person is eligible for certain services (although exploring service options and issues of eligibility may be necessary as part of formulating a plan). Rather assessing support needs is about gathering and analysing information about the person, their environment, what is important *to*

and *for* them to live a good life, and the supports required for them to maintain or improve their functioning and quality of life (Chenoweth, 2005; Rummery, 2002).

The scope and nature of information needed and the method of engaging in the assessment are determined by the purpose of planning and the mandate given to the professional. Nevertheless, even if a plan is focused on one area of a person's life such as employment, it may also require supports in other areas of their lives (such as transportation) to be considered. Effective assessment of support needs is a holistic and dynamic process that seeks to understand the various elements that impact the person's quality of life and functioning across multiple settings and environments.

The most vital information comes of course from the person themselves. Knowledge about the person, their situation, and their goals and needs can be gained through purposeful conversation and observation with the person across multiple settings over time. It is unlikely to be enough to simply ask a person what they want or need, as many people, particularly those with intellectual disabilities, fnd it diffcult to conceptualise and articulate their needs. Moreover, many people lack the confdence, knowledge or experience to make informed choices about things they want for themselves (Priestley, 1998). Therefore, it is important for the professional as an "expert on the process" to support the person to think about different areas of their life, ask questions and raise new ideas, opportunities and possibilities (Milner & O'Byrne, 1998; Rummery, 2002). For example, the professional can ask questions such as the following: "How do you want to spend the day?" "What do you want to learn to do?" "Where do you want to live and with whom?" "Where do you want to work?" "Who do you want to spend time with?"

Particularly, when planning with people with intellectual disabilities, it is important to also include other sources of information. This may include, for example, perspectives of family and friends who know the person well or in different contexts and settings. It may also be helpful to interview service providers and review case notes and documents such as prior assessments, health checks and service reports.

Most organisations provide frameworks to guide the domains to be covered in the needs assessment or require a review of specifc documents as evidence. While some require a broad exploratory process, others call for the use of standardised tools, such as the Supports Intensity Scales (SIS) (American Association on Intellectual and Developmental Disabilities 2015–2018) or the Inventory for Client and Agency Planning (ICAP) (Bruininks et al., 1986) and the Instrument for the Classifcation and Assessment of Support Needs (I-CAN) (CDS, 2021).

Regardless of the specifc format, for an assessment to be effective it must consider three overlapping factors: the person, their environment and the supports. This stage of the process seeks to gain:

An understanding of the *person*:

An understanding of the *person's environment*:

An understanding of *supports:*

Next, it is important to gain insight into what is "important to" and "important for" the person. "Important to" the person is what matters to the person, their dreams and goals, and what it means for them to live a good life today and in the future (Sanderson, 2000). For example, where they would like to live and work, and what activities they want to participate in and with whom. Initially, in this part of the planning process, it is appropriate to support the person to explore their ideal vision, ensuring the discussion is not constrained by available resources or perceived barriers such as restricted funding or limitation in personal skills (O'Brien & O'Brien, 2002; O'Brien & Lovett, 1993). However, when engaged in the latter part of planning, making the best use of the available resources is clearly relevant.

In contrast, thinking about what is "important for" the person takes a more normative approach, focusing attention on what community standards might consider is necessary for a good life. For example, the plan could consider the person's need for participation in the community, taking on valued social roles, and staying healthy and safe in their environment (Sanderson, 2000).

Information gathering is not an end in itself. To be of value, the information gathered from different sources must be analysed and interpreted to help understand the person's goals, needs, risks and potential domains for change. This analysis provides the evidence on which decisions about goals, outcomes and potential strategies can be made. The assessment process also seeks to uncover and highlight potential challenges for implementation.

3. Formulating the Plan: Setting Goals, Strategies and Processes for Monitoring and Review

Support planning processes aim to formulate an optimistic but realistic support plan that sets out the person's prioritised outcomes and specifes strategies and actions that will lead to these (Thompson et al., 2017). As already discussed the scope, nature and format of a plan are determined by its purpose, context and the mandate given to the professional. Regardless of any particular format, every plan should include three elements:

#### *Goal Setting: What Will the Plan Achieve?*

Goals represent what the person wants to achieve to live the life they want. Goals should be phrased as the desirable outcome the person wants and articulate what exactly will change in their life circumstances as a result of implementing the plan. Goals are personal and tailored specifcally to each person's wants and needs, bringing together what is important to and for them in different life domains (see Chap. 2). The agreed set of goals should be phrased clearly and detailed in an observable and measurable way and set out a specifc time frame for achievement.

A goal could be something that the person wants to do now or in the future, for example, participating in social and recreational activities: "In the next 12 months I want to go to the shopping centre by myself or with friends", or "I want to join a social club". A goal could be about relationships with others or social inclusion: "I want to have more friends", or "I want to go for family dinners". It could be something that the person wants to learn to do to build their capacity: "I want to be able to communicate more effectively with people", or "I want to cook my own meals". Or it could be something that would allow the person to be more independent and have more choice and control over their life: "I want to live in my own home", or "I want to travel independently".

Goals can be big or small, or short term or long term. Long-term goals usually involve complex changes that take time to achieve. Long-term goals often require more detailed planning, breaking big tasks into steps using short-term goals as stepping stones to larger goals.

Decisions about which goals are to be included in a plan require careful consideration and negotiation. The needs assessment process will have given an overall picture of the person and their vision for a good life but may have resulted in a long list of goals. It is unlikely that a support plan can effciently include all the goals identifed by the person or all areas of a person's life. Therefore, at this stage of the process, the discussion should focus on prioritising goals to be included in the plan.

The person's preferences should be the starting point for this discussion. As with the previous stage about envisioning a good life, it is important to remember that while some people are very clear about their goals, others may require help in identifying and articulating their priorities. It is the professional's role to help a person explore different elements in their life and to think about the changes that would most help them to live the life they want. Setting goals needs to be realistic to avoid failure and requires careful consideration of the resources required to meet them. Therefore, it is crucial at this stage to consider the person's capabilities as well as the availability of support services and resources in their environment.

Furthermore, sometimes the goals identifed by the person are different from the needs seen by caregivers, families, friends and other professionals. For example, a person may aspire to participate in activities that may be seen by others as a risk to their health, safety and well-being or as unrealistic because of the person's skills and capacities. When these issues arise, it is the professional's role to support the person to articulate their needs and at the same time help family members voice their concerns. The professional helps the parties to balance the principle of dignity of risk with the duty of care. Then, the parties carefully work through their differences and reach a mutual agreement about goals and how the person can be best supported to reach them.

Negotiating goals requires open and genuine discussion about practical possibilities and constraints. A good planning process seeks to balance the person's choice and what is realistic in a given context. For example, Mary's goal is to "have a job and earn my own money", but the needs assessment and family members recognise that she struggles to wake up in the morning on time. It is the professional's role to lead an honest discussion about what it may take for Mary to fnd a job and refect on how important it may be to improve her time management. If Mary agrees the importance of this and is willing to work towards it, the plan could include Mary's long-term goals as "getting a job" broken into shorter-term goals such as "in the next 12 months I want to be able to manage my time better so I can be ready on time to go to my morning activities".

#### *Identifying Strategies: How Goals Are Going to Be Met*

This part of the plan is closely aligned with the goals and is about the "how". It sets out what services, supports and particular steps are required to achieve the person's goals. Each goal usually has several strategies detailing the activities, services and supports (what would happen), responsibilities (who will do it) and time frame (when would this happen, for how long).

When considering strategies, it is important to explore potential formal and informal sources of support that may assist the person in achieving their goals. These could include:

As with all other parts of the planning process, identifying strategies is a collaborative effort: the person, the professional and others the person wants to be involved in their life should be invited to contribute their expertise and knowledge in identifying ways to accomplish the person's goals. The decision about what strategies to include must refect the person's preferences and the availability and accessibility of support and services (Bigby & Frawley, 2010). There are many different possible ways of reaching a goal. It is important to consider what might be the most effective pathway for the person at this point in time. For example, if Jim's goal is "I want to learn how to cook my own meals", strategies could be:

When describing the strategies, it is important to use clear, specifc and objective language. Where possible, avoid ambiguity or the possibility of misinterpretation by giving measurable milestones or actions. For example, it's better to say 'twice a week' than "regularly".

This stage also requires the professional to facilitate an in-depth discussion about potential barriers to supports and how they will be addressed in the plan. This might involve considering the person's motivation, past experiences and availability of resources and funding. This will ensure that any barriers stemming from limited funding and the availability of formal and informal supports and services are clearly recognised, addressed and resolved before the plan is implemented.

#### *Monitoring and Review Processes*

Planning processes must include discussion about the management of the plan, monitoring and review. The professional leading the preparation of the plan may not be the person responsible for its implementation and tasks such as fnding and coordinating services or day-to-day plan management. This makes it crucial to identify who takes responsibility for organising and implementing strategies for every goal and who will have overall responsibility for coordinating strategies and monitoring progress.

Planning is an ongoing process; personal preferences, resource availability and social environments change over time. Reviewing the plan and evaluating its outcomes help to ensure that all actions, strategies and supports are revised if they are not effective or no longer meet the person's needs and goals.

## Conclusion

Support planning is a core component of policy and service provision for people with disabilities and their families. Supporting people to develop a plan is now a primary task of the disability workforce. In this chapter, we identifed the core principles and processes of successful support planning.

It is important to remember that plans are merely means to an end and are meaningful only when they are implemented effectively and result in a better quality of life and choice and control for the person. Successful support planning requires professionals to build partnerships with the person and the important people in their life and services, to guide an open and genuine exploration of the person's needs and goals, and to reach an agreement about how to meet them. This requires considering different perspectives about the person's situation, resolving tensions, identifying priorities, negotiating resources and considering opportunities for change. It is only through this shared understanding that meaningful goals can be identifed and prioritised, and realistic strategies can be planned and implemented.

#### *Take Home Messages*

### References

Disability Insurance Scheme. *Journal of Intellectual and Developmental Disability, 41*(3), 272–276. https://doi.org/10.3109/13668250.2016.1151864

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## The Right to Participate in Decision Making: Supported Decision Making in Practice

## *Christine Bigby*

Most people do not notice the decisions they make throughout every day which determine what their day will be like. For example, what time to get up, what to wear, whether to turn the radio on, whether to exercise before or after breakfast or whether to have the day off. Too often decision making only becomes visible when 'big decisions' need to be made—where to go on holiday, whether to apply for a new job, whether to move house. This might be when people stop to think about the processes involved in decision making and why these are important. All the decisions a person makes, whether little or big, infuence their life in some way, and contribute to their sense of autonomy and self-determination: the choice and control a person has over their life. Yet too often people with disabilities are denied the right to make decisions and others make decisions for them. This may occur informally, through the everyday actions of supporters be they staff or family members—or formally when supporters have a specifc mandate, having been appointed as a person's nominee or guardian. Denying the right of people with disabilities to make decisions happens for

Living with Disability Research Centre, La Trobe University, Melbourne, VIC, Australia e-mail<EMAIL_ADDRESS>
C. Bigby (\*)

<sup>©</sup> The Author(s) 2024 201

C. Bigby, A. Hough (eds.), *Disability Practice*, https://doi.org/10.1007/978-981-99-6143-6\_11

many reasons: fear of risks, paternalistic attitudes that people are incapable of understanding the options or of knowing what is best for themselves, rigid service systems organised around managerial needs or staff preferences—think for a moment about rosters and working hours—or simply a lack of supporter's time or skills to provide good support for decision making.